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Antisynthetase treatment

Deaks Message
7 Feb 2009, 12:49 PM

To Twigy17 I am so sorry to hear about your loss and to be diagnosed with this disease is insupportable. Your English is better than my French although I speak a little French. The doctor ast the hospital put me on 20 mg a day of Prednisone (Courtancyl) at the beginning of the treatment and 200 mg twice a day of Plaquenil. The Courtancyl has been reduced to only 4 mg per day. I am feeling quite well at the moment and can continue life as usual. I have to take bone strengthening medication (Protelos 2) as the Cortancyl can cause bone density loss. Also I have phenomene de Reynaud (similar to Mechanics hands) and must have a Scaneur Doplar very soon. Also 6 monthly checks for the retina in the eye because of the Plaquenil (but this is just a precaution)My medecin has applied to the CPAM for 100% and seems quite positive that it will be granted so I suggest that you ask your medecin to do the same if he hasn't done so already. I do hope that you got some positive news soon and that you begin to improve with medicastion. Isn't it nice to be able to share your experiences with someone else who has tha same thing, I am sorry that I don't speak better French but I will try harder next time - I just wanted to reply to you quickly. I send you a bise. Deaks x
twigy17 Message
7 Feb 2009, 04:01 PM

Thank you for your quick answer Deaks. I have the syndrome of raynaud too besides mechanics' hands. My medecin has already spoken to me about the application to the CPAM for 100% but he don't know when I will begin the treatment. For you what is your symptomes except for the phenomene of raynaud? Lung fibrosis? Muscular pains? It's very nice to share our experiences ; You're the first personn i found who have the same desease. I do hope that you got some positive news soon too. I send you a bise too. Cécile
Deaks Message
10 Mar 2009, 02:20 PM

Hello Reidl sorry to hear that you are having such a tough time. I did have azathioprine initially when they thought that I had Lupus (in UK 1991) but I could not tolerate it and was in danger of other infections. Fortunately I did not need a lung biopsy, but now that part of it's over for you perhaps the information gained will improve things for you. The treatment that I've received in France so far has been superior to the UK. Unfortunately, at the moment I have a "chest" infection which the doctor thinks is linked to the condition so am on antbiotics again. I agree that the Prednisone is "like a miracle". For me it was like that and I felt better quite quickly although I do get times when I'm not up to par. Don't you just get tired of keep taking meds all the time? I know that I do - my life seems to governed by them as I take meds for other problems as well. Anyway I hope that you can soon come to terms with your condition and lead a full life. I wish you well. Deaks
twigy17 Message
10 Mar 2009, 10:00 PM

Hello reidl and sorry to welcome you among us. However, it's good to exchange with other persons affected by this disease. I would like express myself more clearly, but my English is really limited, that empeche me to ask you clearer questions. i don't know book of Norman Cousins but it seems interesting and there is a french edition, so i will read it ! I do hope that you got some positive news soon. i wish you well. Deaks, i am really sorry to hear that you have a chest infection at the moment and i hope you will feel better quickly. i wish you well.
sarahlaidler Message
18 Mar 2009, 06:37 AM

Hello All, I was surfing the internet to find out what exactly Anti Synthetase Syndorme is when I happened upon your postings. I am so happy to find some one who has the understanding of this disease. I thought I was alone. I was recently diagnosed with ASD four months ago after being told I had Scleroderma. Well, to my disappointment I still have Scleroderma and other autoimmune diseases and have been told it is called Mixed Connective Tissue Disorder. I am in search of answers and support and I am hopeful you may be able to help. If not, I know you will understand if I reach out for support from you, if this is alright with you. Thank you for listening (reading). Sending Peace Love and Blessings from Sarah Jacksonville Florida USA
twigy17 Message
18 Mar 2009, 10:29 PM

Hello Sarah, i don't have many experience of this desease for the moment but like you, i thought i was alone. I am so sorry for all your autoimmune deseases and i hope you feel better very soon. My english is very bad so it's hard to explain all my condolence. But i want you to know that i will support you as i can. Best wishes Cécile
Deaks Message
19 Mar 2009, 02:25 PM

Hello Sarah, You are not alone, as you can see there are quite a few other people with this disease and all have similar stories to tell. We are all looking for answers and as the doctors do not have them all, it's good to reach out to others who have the experience. I too was told in the begining that I had Lupus or mixed connective tissue disorder or TB or polymalgia rhumatica - the doctor that I used to see in the UK was not sure. He must have had some sort of clues though because he used to send me for lung functions tests every year and also a CT scan which showed up scarring on my lungs which they said that they didn't know what caused them but there was no need to worry. Also in the beginning I had many bad pains in my limbs and could hardly walk at one point until I started taking prednisone. As I have said before I was fine for many years after that and lead more or less a normal life. I was, I suppose in remission when we came to France in 2002 and it was only in 2007 that I became ill that it came to the fore again. It seems that there is reason to be positive and hopefully we can all have times of remission when we can enjoy life to the full. I'm sure that a positive attitude also helps enormously (my sister has been fighting terminal cancer - she has had it 3 times with all the horrible side effects of chemo and radio therapy and she is extremely brave and I'm sure that her attirude has helped her). Love and hugs from Carol
Shonna Message
19 Mar 2009, 03:44 PM

Hello All, My name is Shonna and I stumbled on to this site a little over a month ago but did not post anything. I am 32 and live in the US and have been experiencing symptoms for about 6 years now. I was initially diagnosed with asthma. I have since had to change doctors because that one did not do anything to try to figure out what was wrong with me. I have had a new doctor (well, team of doctors) for about 15 months now and they have been very dilligent in trying to determine what is wrong with me. I was diagnosed with Interstitial Lung Disease in April of 2008. They have finally diagnosed me with Antisynthetase Syndrome February of this year(a month ago). I am on Prednisone, Azathioprine, Robaxin and a few other meds. I have shortness of breath, sporatic muscles spasms throughout my body(even my fingers and toes), fingers and toes turn blue, joint pains in my hips, knees and ankles( sonetimes this makes it very difficult to stand up from the sitting positin), ocassional headaches, etc... I could go on. I'm sorry that we all are experiencing this and hopefully they will find some way to treat this properly without all the side effects.
juliarey Message
19 Mar 2009, 11:41 PM

Hi Sarah and Shona!!! Well, Its seems we are gathering a small group of people now!!! We are not so alone!!! I told my story in another post, but I repeat that I am ill since my baby was born (ten months ago) I had joint pains, muscular pain and weakness, like Shona tells, It was very difficult to me to stand up, or to use the stairs. I got my diagnosis on December 20th, and since that I am taking prednisone and ciclofosfamide. I am feeling very well, every day I feel better, and I have changed the way I used to lead my life, like I said to Carol, I am not in charge of the world any more!! Shona, aren´t you feeling a little better already? Sara, some doctors say I also have Mixed Connective Tissue Disorder, because they found the ANTI Ro positive, too, and I had anthifosfolipide a few years ago. I repeat the questions I asked In the other post for you: Do you have an idea of your own about how do you get sick? Had it something to do with stress or other feelings? Sara and Shona, Do you have children? Did pregnancy have something to do with the disease? My English is awful sometimes, when I want to express myself with more freedom, because I am from Argentina and speak Spanish. I would appreciate your efforts to understand me... Welcome and best wishes for us all... Kisses Julia
sarahlaidler Message
20 Mar 2009, 05:06 PM

WOW!!!!! HELLO EVERYONE I AM OVERWHELMED!!! I am close to tears. I am so happy (I know you all understand what I mean) to find others who share my situation. And to connect with others worldwide. I too am on Azathioprine, Imuran, meds for pulmonary fibrosis, and hypertension, just to name a few. Living in Florida helps control my Raynauds due to the warm weather, my fingers don't turn blue as much as when I lived in Washington DC. I have fantastic doctors and I am blessed that being a disabled veteran, I am under the VA for my medical care. I cannot express how much joy I feel making a connection. I have told my doctors about this site so they can refer others to it. My dr says there is no known reason for this dis-ease and it is surprising that I am the only one in my family with this. For stress and depression I am taking celexa have been for years as I have been dealing with misdiagnosis since 1993. I am in therapy with a psychiatrist who monitors me and I have SAD seasonal affected depression on top of that. To my new international friends, your English is great and I do understand what you are saying, so please continue communicating. You asked about pregnancy, it is interesting that my symptoms became more apparent after my short pregnancy. Because of the scarring that Scleroderma does to the body, I believe my ectopic pregnancy rupture was a result of that. I did not carry to full term. I have the same joint soreness as you Shona, I am in university and after sitting for a long time in class, my knees swell and I have to walk slowly to get moving. Reading your stories is like reading my own, it is as if I wrote the words myself. Have any of you had or have problems with high blood pressure? Due to the restrictions of blood vessels in my hands, it causes my blood pressure to rise. I want to continue, but I have to stop to complete my class assignments. I will be back as soon as I can. Thank you all for being there Juliarey, thanks for the insight, I have to know the same that I am not in charge of the world, just my world and Deaks our situations is so similar, I too have a sister dealing with cancer, breast cancer, which as you may well know presents added pressure and stress for me. she received her latest blood tests which revealed the cancer is back and she is making the decision to have her other breast removed. Life, is demanding and sometimes I don't know if I can or want to deal with it. I just want to go somewhere and hid but I know that is not the answer. Please know that right now I am expressing depressed feelings and I hope I can do so with you and feel safe that I can reveal to you what I can't to others, and you will understand. my family really don't get it or me, because I look healthy, they think nothing is wrong. signing off for now Blessings ciao, bonjour mon ami, adios mi amiga with all our help we will get through this Peace Love and Blessings from Florida
Shonna Message
20 Mar 2009, 06:35 PM

Hello Again All, Julia and Sara: I did began having problems during my last pregnancy. As a matter of fact, it was labeled as a High Risk pregnancy due all of my complications and pain. I was continuously placed on bed rest and eventually had to take an early Maternity Leave from work. As far as me feeling better, I do feel a little better. The increase in the Azathioprine is what I believe made the diffrence. I also have High Blood Pressure and my heart races, so I am on meds for that too. I am scheduled for another PFT next week. I was also in school (for Nursing). Unfortunately, my condition had gotten so out of control that I had to quit. I am currently on Oxygen as well. Also ladies, I have to say, there is nothing better than life itself. I am blessed to still be here to enjoy my children. I deal with all of my problems as they come and I don't allow them to stress me out or get my spirit down. I am a very realistic and positive person. I am well aware of what will eventually come about but I don't worry about that. I try to keep positive energy around me at all times. Sometimes it also helps to cut negative people out of your life. We all have to remember that even though we don't want to hurt the people around us with the issues that surround our disease, WE are the ones actually LIVING with the disease. Sometimes we have to remind our loved ones of this. I hope everyone is having a blessed and wonderful day! Talk To You Guys & Gals Soon!!!!!!
Deaks Message
21 Mar 2009, 12:51 PM

Hello all, again Well how our little community has grown! We all have similar stories to tell as well. It's funny but I may be wrong but there does not seem to be any English sufferers here - maybe they are are still not being diagnosed in the UK??? I have Reynauds though not too badly but had to have a dopler scan recently as the doc could not feel the pulse around my feet and ankles (I can never feel my feet and my fingers are nearly always blue) as I had a "chillblaine" that wouldn't heal up, fortunately all was well but it was a worry at the time. Yes I have hypertension and take "statins" for high cholesterol and I also take medication for a hiatus hernia which they also discovered at the time of my diagnosis. Cecile, I am interested to know how it was for you when you returned to work - did your friends at work support you and how did your your superiors react? I would also be interested to find out what the professor in Paris has to say to you in June. Sarah, I understand how you are feeling right now (I have felt the same) but it will pass. I have the same experience with people close to me as you say they don't know how you feel and if you look OK it doesn't occur to them that you might be in need of a little more support. I am sorry to hear about your sister but there is still hope as the treatment for cancer is improving all the time. I wish her and you both well. Today, is a lovely sunny day and the spring flowers are blooming and when I look over the valley from the window of my house I realise how lucky I am to live here in the Dordogne and be accepted by the friendly french people. I am so grateful to french doctors who diagnosed my disease and give me such good care and I live in hope that with more research into this disease that someone will come up with a better treatment for all future sufferers. Have great weekend Hugs to everyone Carol (Deaks)
juliarey Message
22 Mar 2009, 05:38 AM

Hello friends!!! How are you today? I was not so good. I thought It will be all getting better (I know, I am so naive) But one of the blood tests CPK came high again, and my doctor rises my prednisone dosis again, so I was feeling a little low, and with PAIN. Maybe part of it is in my mind, but my pain increased the moment she told me the bad news. I am a little sad, and my family don`t let me be sad, you know what is this like... So, I leave the tears for this late hours... I don`t know what else to say today. Many kisses to you all Julia
Deaks Message
22 Mar 2009, 08:24 AM

Hello Julia, I feel so sorry for you and I know that the pain can be unbearable. I have the same problem with my husband - he doesn't understand as he is never really ill and thinks people who succumb to the pain etc.are weak. You know that you can get all the suport that you need here, we all know what you are going through - keep you head up high and I hope that when the higher doses of medication start to work, you will feel a bit better. You have my love and good wishes. Carol x
twigy17 Message
22 Mar 2009, 02:36 PM

Hello everybody, Yesterday, I saw a psychotherapist which uses alternative medicines. She explained me that specialists observe the auto-immune diseases usually come from 2 factors : emotional factor and toxic factor. She asked me if I get vaccined when i was young, in particular the hepatitis B vaccine. At this time, I realised that I get vaccined of the Hepatisis B just before I had mecanic's hand, it's means 10 years ago. Maybe it's a coincidence because nothing hasn't scientifically prouved, but a lot of auto-immune desease seems to be connected to this vaccine, particulary "multiples sclerosis". Have you ever got vaccined of the hepatisis B? As regard to the emotional factor, i hope she will help me to fight against this desease. The psychoterapist suggest me to try natural treatment before beginning corticoid and immunosupressive treatment. I told her why not but i would like to know the point of view of the doctor of the hospital before get a decision. Unfortunatelly, traditional doctor have a lot of difficult to be agree with alternative doctor but i would like to find the happy medium. Does anyone try alternative medecine before begining medical treatment? Carol,When I returned to work, one month ago, I talked about the desease only with my superior. As my family, because I look healthy, he thinks nothing is wrong. My colleagues from work are very self-centered and i know they don"t really support me if i told them. When I loose my baby, even they show me their friendship, they looked at me as if i landed from Mars so I prefer keep it to myself for the moment. Thank you for all your support everybody, i send you much kisses, Cécile from France
juliarey Message
22 Mar 2009, 11:18 PM

Hi Carol!! I want to tell you that I`m feeling better, and the pain has nothing to do with the ones I had last year, before the treatment. Thank you for you support. Yesterday I had a very bad day, but I`m better already... Thank you very much... Cecile.. I haven`t been vaccined against Hepatitis B, so I know It wasn`t that in my case. I didn`t get to try alternative medicine either, I thought about it, but for the moment I have confidence in my group of doctors. Besides, prednisone is great when you are in real pain, it`s like a miracle!!! But I did go to a priest who cure with his hands... I hope this treatment helps you. Tell us about it when you know more... Kisses to you all Julia
twigy17 Message
26 Mar 2009, 07:26 PM

Hello Reidl, You know, i haven't already decide if i will try an alternative treatment. This is the reason i asked you if you have already tried. I'm worried about the toxic effect of corticoide and immunosuppressive traitment for long-term, so i am just curious of every possibilities. But like you, i just want to be alive and i will do the best to survive ! I will tell you my next meeting with the homeopathic doctor. I hope i will know more about natural treatment. For the hepatisis B vaccine, i don't really think it's the trigger event but i could be a growth factor. As i said in other post : i have some little pain in my legs and arms, desease of raynau, mecanic's hand and i've just start lung fibrosis. I think i don't have dermatomyositis. I know i'm lucky because for the moment i don't suffer as much everyone here but i dont' kwow for how many times? My traditionnal doctor (not the alternalive doctor but the doctor of the hospital) thinks my desease grow up very slowly but he don't have any experience of this desease (i'm the first patient he met who have this desease). That why he recommanded me to see a specialist of rare desease in Paris in June 2009. I hope i will have confidence in a group of doctors. Thank you to expose me your point of view, i think you're right about the positive mental ! Even if sometimes it's difficult to stay positive :) Which one of Norman's book do you recommand me? And sorry for my not understable english!!! I hope you have a good spring day with sun and hapiness ! Julia and Carol, i hope you 're feeling better and i send you kisses. Shonna, Sarah i hope you have a good day and i send you much kisses from France !
Shonna Message
29 Mar 2009, 12:57 PM

Hello All, Cecile: I hope that you are feeling better on this day. I just wanted to tell you that it may be better for you to just take the Prednisone until your visit with the Specialist in June 2009. I say this because if you have lung fibrosis, it will only get worse the longer it goes without treatment. I only have 50% lung function now because mine went untreated for many years. I can not get my lung function back. I don't want this to happen to you. I do understand your concern of the medication being toxic but in your case, it may only be temporary. I may be in the worse shape in our group here because my condition went untreated for 5.5 years after my trigger event. June is just a few months away so, it would not be long term. Just wanted to share that with you. Hope everyone is having a blessed day. Shonna, USA
twigy17 Message
29 Mar 2009, 01:11 PM

Hello Shonna. Thank you for your precious advice. The problem is my doctor in the hospital don't want to give me any treatment before my meeting with the specialist in June. I hope the lung fibrosis will not get worse until June. Thank you for sharing our experience with me. I hope everybody have a good day. Cecile
juliarey Message
30 Mar 2009, 06:58 AM

Cecile.. I have to tell you that I agree with Shonna. When my doctors found the lung fibrosis, they make me stay in hospital for a week, till I get my diagnosis, and in very few days I was on medication and feeling OK. I believe you must see another specialist, till you get to see the one recomended in June. There are lots of reumatologist that might treat you till then. Sorry to intrude, but I believe that is very important that the fibrosis don´t get worse. Many kisses for Cecile and Shonna too Julia
twigy17 Message
1 Apr 2009, 05:51 PM

Hello everybody and thank you to take care about my health. As your recommandations i took the situation into my own hand. I've just contacted another specialist by email and i 'm waiting her answer about my situation. Thank you very much Shonna, Julia and Reidl. I hope you are very fine today I hope "anatomy of illiness" has been translated in French and i think i will read it. Have a good day, Cécile
Shonna Message
5 Apr 2009, 01:55 PM

Hello All, Cecile: We are here to help each other along the way. I think it is good to be able to communicate with others who are going through the same things that I am. We all have been affected in different ways so that gives us the ability to really help each other by sharing the treatments that are beneficial to us. I hope everyone is having a blessed day. Hugs & Kisses to all! Shonna, USA
twigy17 Message
8 Apr 2009, 08:56 PM

Hello Everybody, I want you to know I will go in another hospital next week and i will stay there for a week to begin traitment and get medication for lung inflamation. My muscular pains grow up since 2 weeks and i hope the treatment help me to feel better quickly. THANK YOU everybody to open my eyes about the situation. I will tell you soon, how i feel with the medication. I hope you have a nice week and beautiful moments of life.
vicki Message
30 Jul 2009, 07:06 PM

Hello, My husband has been diagnosed with antisynthetase and is currently taking prendisone and he will start on imuran. He is 59 years old and never been sick until 2 years ago out of the blue he had to have an aortic valve replaced. He recovered about 95% of his health and then this happens. Anyone else have antisynthetase and heart problems too? He never took any pills his whole life and now he takes about 6 different ones. Talk about depressing. His symptoms with this disorder include the skin on some fingers splitting, pain in joints to where he could hardly get out of a chair or go up stairs. Since starting the medication his pain is gone and his skin hasn't split open. He also has th elung prroblems but early stages and they think its been caught in time so no real damage has been done. We live in Michigan but the disease actually started late Feb. when we were in florida for 2 months.
sarahlaidler Message
1 Aug 2009, 01:10 AM

Hello All, I am back, I finally finished my BA degree in English and am very happy. Vicky, your post touched me, I too have ASD and lung problems. I have pulmonary hypertension and pulmonary fibrosis along with raynauds, I take immuran also. As far as the lungs I use an albuterol inhaler, people with asthma use these and I also have been using a new inhaler called Foradil Aeorolizer and it works beautifully for me. I am not able to walk long distances nor up stairs and I get Pulmonary Functions Tests every 6months. I am 55years old and live in Jacksonville FL, I get my treatment through the VA, I hope he keeps his hands and fingers warm to help cut down on the pain, gloves really help even at night. You can write me on my email if you or your husband need a support buddy. I see a psychiatrist due to the depression of handling this dis-ease. I have mechanics hands also. I have high blood pressure along with the pulmonary hypetension which affects the part of the heart that sends blood and oxygen to the lungs. Hang in there, there is support and help Bless you and your husband Sarah Cassandra Laidler Jacksonville FL
vickiiiii Message
3 Sep 2009, 01:21 AM

Hello everyone with antisynthetase syndrome. A few weeks ago I told about my 59 year old husband who now has this disease. VERY healthy until 2 years ago when out of the blue he needed an aortic heart valve replacement. Responded well and recovered about 85% and then 2 months ago diagnosed with this. Starting prendisone his joint and muscle pain went away. His lungs are not doing so well. He gets winded easily. They started him on Imuran but we belive it sent him to the hospital with chills and a fever of 103.3. Testing showed nothing but his doctor took him off the medication. He wiil be seeing a lung specialist in a couple of weeks in Cinncinati, Ohio. Anyone ever have this reaction to the Imuran? He will start a new medication soon for his lungs and I will update you on how his body is reacting to it. I pray for everyone in here.
marsha Message
28 Sep 2009, 01:52 AM

Hello, My husband 53 has just been diagnosed with Antisythetase Syndrome about a month ago. We just got our muscle biopsy back and it was normal, no abnormalties. He is on Methotextrate, plaquinil,decadron.and several other meds. His ck levels were at 5300 two weeks ago and last bloodwork they were 1810. He has interstitual lung disease also. He is feeling stronger, We live in the panhandle of Florida and are seeing a Rhuematologist here. I wanted to know if anyone knew of a good specialist at UAB Birmingham, or Shands in Gainesville, Fl.? I would appreciate any information about this disease, how long does it take till you feel normal again? When do they start tappering the steriods? Thanks, Marsha
Ladymermaid Message
29 Oct 2009, 07:55 PM

Hi I am new to this site but I belong to a community forum at www.myositis.org where there are a number of people like us who go to discuss this illness. When I first got ill I stumbled onto that site while researching my illness. I was doing research for an article that I was writing and now stumbled onto this site. It is very good to read what others have to say because with rare illnesses there is not always a lot of information out there about them. Even the doctors don't seem to know that much sometimes. It is nice to meet more who are like myself Ladymermaid
alison1967 Message
30 Oct 2009, 09:42 AM

Hi I was diagnosed about a month ago after becoming unwell suddenly with shortness of breath and one blue finger over the summer. I am being treated with monthly IV cyclophosphamide and steroids, aswell as aspirin, losartan and nifipedine for the blue index finger. I currently have pain in my hands, toes, knees, shoulders and chest, and have mechanics hands. Wondering what treatment any of you have for mechanics hands, as the soreness in my hands is terrible at the moment. I was previously fit and healthy, apart from coeliac diagnosis about six years ago, so I am finding it hard to adapt and accept that I can't live life as fast as I used to. My lovely partner is on the receiving end of my frustrations, and I thank God for his patience. The possible trigger for all of this was inhaling a patio cleaner, which may have triggered pneumonia. I was very stressed at the time with interviews for a new job, so wonder if this combination started off this disease. I also had been taking echinacea to boost my immune system as I was a bit run-down. To find this site and read of everyones experiences has been so helpful. I live in the UK. Alison
cookie68 Message
30 Oct 2009, 08:05 PM

Welcome Alison to the group. I was diagnosed 2 months ago and still sometimes feel like I am living someone else's life. To go from being active mother of 3 kids under the age of 12 to being homebound, on oxygen and dealing with all the "joys" of this disease and the side effects of the meds is so overwhelming. All I can say is that I have learned that you have to be your best advocate and be not afraid to rely on family and friends. Take care of yourself! Blessings, Stacy (Cookie 68) Minnesota
Deaks Message
31 Oct 2009, 12:34 PM

Hello Alison, I am also English, although now living in France. Welcome to the community, such a shame to have to access a site like this but there is not much support for the disease, especially as it's often misdiagnosed as something else. I definately think that stress does play a part in the manifestation of this disease. I've had the disease since 1991, although I didn't know it at the time - but the treatment is the same as for AS. I was initialy treated with steroids and Plaquenil and after about 4 years seemed to go into remission until 2 years ago when I had a recurrence, only this time instead of all the pains in my connective tissues I had a lung problem. Fortunately I seem to be improving again and the specialist is considering cutting down the steroids. So you see there is some hope of improving your life. I don't have mechanics hands but I do have Reynauds syndrome and all my fngers go blue and numb but my feet are the worst of all and they are nearly always numb and are always deep mauve in colour. They gave me nefedipin in England but it gave me terrible headaches so now I don't taken anything and just put up with it. I am interested in the fact that you have coeliac disease as I have been having "digestive" problems for a while now and on researching the disease it appears to be autoimmine also and my doctor thinks that there could be a connection. What do you think? You have all my best wishes for an improvement. Carol (in the Dordogne ex Hertfordshire) x
juliarey Message
2 Nov 2009, 12:14 AM

Hi People!! How are you doing? Welcome to the new ones. I`m 37 years old and on December will be a year since I was diagnosed. At first I felt I was living a nightmare, that It wasn´t real, but then I started to get used to the illness and the treatment, and it gets better. I am feeling "almost" normal. In this moment I am tapering the prednisone. I ´m in 20 mg, Sometimes I get some symptoms and thats why pred is still a little high. I had mechanic hands but they get better with this, too. I also take Plaquenil. I believe I got ill during labor. It was very stressful to me. It was a surprise, because I wanted a non drugs or epidural birth. But the pain was too much and I think that was the moment... Many kisses you all. Take care!!! Life is good even with this!!! Julia
alison1967 Message
4 Nov 2009, 09:41 PM

Thank you for your replies and welcomes, it is good to read of positive improvements; I am finding it hard not to be sure of the future and would love to be able to see how things will be in a year, ten years etc, just to know and understand a bit more. I spoke to my consultant today, who wants to increase my steroids again as my joints have been getting stiffer and more swollen. I was hoping to reduce steroids to 5mg next week, but will have to take more instead now...more side effects which I hate. Stacy - I know what you mean about feeling like someone else; letting my family help me when I am usually a complete control freak has been a very hard lesson to learn. Carol - we have some very dodgy genes in my family in the auto immune department, lots of immediate family with Type 1 diabetes and coeliac disease, so I would definately think there is a pre disposition for our bodies to attack itself, whether its our connective tissue or in our gut. Coeliac disease is quite tricky to diagnose, because the symptoms are so different in person to person. Its good that your doctor is considering it, doctors here often don't think of it and many people go undiagnosed for years. Are you having coeliac blood tests done? I had to eat lots of gluten before having the blood tests done, which came back positive, and then had a biopsy of the gut which was positive for coeliac. My main sympton was extreme fatigue. Julia - do you think your mechanics hands improved with the steroids? I hate having such rough hands and use so much lotion on them, but nothing works. Thank you again for your replies Alison x
Shonna Message
17 Nov 2009, 04:52 PM

Hello All, It has been a long while since I have been able to talk with you all again. I have had some ups and downs. I am currently in Pulmonary Rehabilitation because I have gone from having 50% lung function to 44% a little over a month ago. Also, my Pulmonologists and I have been discussing my being placed on the Lung Transplant list. I'm not sure exactly when that will take place but I can say that the Pulm. Rehab seems to be helping a little. It is a blessing to still be able to function at all so, I have to say that I am good for now.
juliarey Message
22 Nov 2009, 08:50 AM

Hi People!!! Alison, my main concern is the same as yours: what would happen? How would I be in a few years? Thats the issue that doesn´t let me sleep. But I`m much better that one year ago, and that`s a good sing... My doctors are worried about my cholesterol levels, because it`s a risk factor in one or two decades. I cry when they say "when you are fifty or sixty"... But they assure I`ll still be here!!! About my hands, yes, I think they got better with the prednisone. Shonna, It`s sad to here about your lung function, but It`s great to know that you are feeling good even so. Don`t doubt to have a transplant I you have to... That would give you a new start. Of course, if your lungs still work, there`s no rush, but It`s good to know you have the opportunity.. I really wish you get better!!! MANY KISSES TO YOU ALL... TAKE CARE!!! Julia
Gregster Message
27 Jul 2010, 03:44 PM

So, Carol and Shonna, how is it going a year later? I've seen postings from Julia on the "what type of antisynthetase?" thread, but I don't think you've been posting there -- I'm hoping you got some relief and some stability and some real help. But in any case it would be good to catch up with your stories, with which I feel a lot of sympathy and empathy and "Yeah, that sounds like what I felt!" echoes, especially the rapid changes of pain levels and types of discomfort. Greg (July 27, 2010)
doreen Message
27 Jul 2010, 10:18 PM

Hello to Greg and all others on this forum - This is my first post - my husband was diagnosed with antisynthetase syndrome a couple of months ago - Just started with IV Cytoxan (this is is first treatment). He was diagnosed approximately ten years ago with dermatomyositis but it went into remission about three years ago and he did not have any symptoms until approximately seven to eight months ago when he developed a cough, nodules on his elbows, more joint pain, etc. He has UIP by CAT scan with scarring already noticed in both lungs? Does anyone have similar symptoms and history?? Thanks for your response. Regards D. P.S. He has positive anti-Jo, positive ANA, elevated sed rate, very elevated rheumatoid factor at 670. I like Greg would also appreciate any feedback from anyone who has had this diagnosis.
Gregster Message
28 Jul 2010, 07:39 AM

So, Doreen, your husband is receiving intravenous Cytoxan as a first therapy for antisynthetase syndrome? No Prednisone or other steroid along with? I wonder if that treatment was chosen because of the lung complications...my own situation has been diagnosed as myositis and while lungs had some pneumonia, large muscles in upper arms have been dramatically affected -- weakened -- and my swallowing, too. The swallowing was such a problem that my pulmonologist felt for quite some time that it led to aspirating pneumonia, although now he accepts the rheumatologist's finding of myositis, which is known to produce a "secondary pneumonia" all on its own, along with muscle weakness and scarring of muscle tissue. At the moment my shoulder biopsy pathology report is waiting for a vacationing pathologist to return and finish writing it up, so some fine distinctions among various "flavors" of myositis haven't been made in my case, but I've been told my anti-OJ is a very rare serology. Unfortunately, rare means little-studied, so the implications are unclear. I'm not even clear on how antisynthetase syndrome fits within "larger" categories (as I presume) such as myositis, of which (again I presume) dermatomyositis is a subclass. In any case, the lung problems I'm having are worsening despite the course of 500 mg. Levaquin the rheumatologist prescribed as the very first coughing -- along with dramatically increased phlegmy congestion -- began building up a week ago. The myositis, with its compromised lung function and low-grade feverishness and growing weakness, but no coughing, dates back to March, and here we are as July is almost ending. Prednisone (60 mg.) got rid of the fever immediately, and lowered my 'CK' in ten days from near 7000 to under 3000. That was the first relief I got after three rounds of antibiotics had accomplished nothing during April and May and June, as I grew weaker and more emaciated, feverish the whole time unless dosed with Advil. Today (Wed. July 28) I see both my rheumatologist and my pulmonologist in separate visits. We'll see what they suggest for my chest, which is racked with knife-like pain every time I cough -- this is a totally novel experience that began some five days ago, and only shallow breathing and a concentrated effort not to cough can control it, although chewing Pepto Bismol tablets slightly lessens the severity of the pain and the likelihood of the cough, it seems. Intravenous immunoglobulin is already scheduled for a mid-August start date, but that's just steroid-sparing therapy, nothing specific for chest and lungs, so far as I know. Good luck, everybody! We all need it.
doreen Message
28 Jul 2010, 02:00 PM

Greg - I have read that some individuals have very severe problems with their stomach with this disease, i.e. heartburn/indigestion, etc. In fact, last year my husband had a period of time where he was up many nights with an upset stomach. We thought it might be stress related but in thinking back, this was about the same time he started getting other symptoms like the cough. To answer your question about the Cytoxan, the rheumatologist was initially going to start him on Cellcept but after he went to the pulmonologist and his pulmonary function tests revealed he has 40% decreased lung function, they decided to start him first on the Cytoxan and then go to the Cellcept. He does not want to take steroids although when he was getting the IV Cytoxan, they did slip one in. He has a problem with his eye pressures (probably the start of glaucoma) so he would have to get those pressures down before he could go on prednisone anyway. When he was first diagnosed with dermatomyositis several years ago, his CPK levels were never as high as yours. He did have very bad cracking of his fingertips and neck pain and that seemed to be the worst of his symptoms. His CPK level is not elevated at this time (adolase is though), but that seems to be the only thing at this point that is not elevated!! I see you have pneumonia - my husband has had this a few times along with bronchitis which seems to occur in the February/March timeframe but he was treated with antibiotics and did well. I hope you can get that under control. I am not an expert by any means but you should ask to have a CAT scan of the chest done. I dont think you mentioned that you had one. This would be important to check for any king of lung involvement. Unfortunately, my husband already has extensive damage to his lungs but if they catch interstitial lung disease early, they can reverse some of the damage before the lungs get scarred (or develop the honeycombing). I have also read about Tessalon perles for the cough although it will make you rather sleepy. Good luck with your doctor visits today and I hope that cough gets better. D.
Gregster Message
30 Jul 2010, 01:52 AM

Thanks, Doreen, and the cough is getting much better and the lung congestion lighter but not gone...yesterday's pulmonologist visit included a pneumonia shot, which may have helped. EKG and chest x-rays were reassuringly clear, a hint that acid reflux is the culprit in provoking coughs and making them painful, although the rheumatologist indicted atrophying of chest musculature in the sort of pain I'm experiencing, now aching chronically here and there without waiting for any cough to trigger it. So physical therapy is something I'll start soon to build up strength in the muscles which myositis has been breaking down. I asked my rheumatologist why myositis doesn't just come right back up as soon as immuno-suppressive dosages taper off. He made an analogy to splashing some water on a fire (look, it's gone out -- so that's it...) and then explained that 80% of the time it does come back. In yesterday's 'CK' blood-work results, my levels dipped 70% further down. This is a very encouraging trend! As the Levaquin runs out, my pulmonologist feels that Prilosec OTC will be the way to go for relief of coughing and chest pain, while a nebulizer, sucked on three times a day for a few minutes each, will deliver a mist of aerosol preventatives warding off pulmonary infections, or that's the theory anyway. The rheumatologist is prepared to wait and see, and he will monitor my tolerance of the IVIG which I start in less than 3 weeks. Good team! But 80% is a pretty big overhang of inescapable decrepitude.
vickiiiiiiann Message
6 Sep 2010, 05:04 AM

Hello again. My husband has antisynthetase and is doing really well except for the split skin on his fingers which we are working on. My question is do any of you have the blue fingernails? What do your doctors have to say about it?
doreen Message
8 Sep 2010, 02:34 PM

Hi Vicki - my husband also diagnosed a few months ago- could the blue fingernails be due to Raynauds which many people with this disease have? Dee.
lildreamer Message
10 Apr 2014, 05:41 AM

Twiggy how long did it take to get into remission?