Hey folks, I've had a terrible meeting with my Rheumatologist and would love to hear your thoughts... Background: I have ASS with Anti Jo-1 and ILD. I was diagnosed in Sydney 8 weeks ago and symptoms include muscle weakness, shortness of breath, arthritis and mechanics hands. I'm on 37.5mg Pred (down from 50mg) and 100mg Imuran (up from 50mg). I have 3 young kids so home life is pretty hectic. Situation: My biggest obstacle at the moment is muscle fatigue. It stops me from getting back to work proper (however I am working from home freelance when I can). I told my consultant that there's a pattern each week. I'll have a couple of good days with only some muscle fatigue. On these days I work from home and do chores around the house. Then I'll have a couple of days where the muscle fatigue becomes more pronounced resulting in "hitting a wall" where my feet go numb (yet have arthritis) and I can only shuffle about. But I'll do what I can around the place because I hate sitting still. However, I've learnt that if I don't rest at this point I'll face a day or two of complete physical exhaustion where it's hard to walk, need lots of rest and find it hard to work (even on a computer) because my legs, arms, torso and hands are just so wretchedly fatigued!!! Consultant's Feedback: He said my recent blood test show I have responded well to treatment because my CK levels had reduced from 500+ to 69 (good news!!). However, as for the muscle fatigue he said "it simply doesn't make any sense", saying "its not characteristic of the disease". He said "you can have muscle weakness but not fatigue" and ultimately thought this experience was "all in my head" and I should be back at work full time. I was floored! I explained my mental state is pretty good and I'm not the hypochondriac personality type but he persisted with his view. You know I've only just learnt to slow down when the warning signs are there to better manage the extreme fatigue. I've tried pushing through the fatigue in the past and I'm cactus the next day. His view simply doesn't make sense to me and my experience. His plan is to get me off Pred as quickly as possible - 2 weeks @ 25mg, 2 weeks at 15mg, 2 weeks @10mg. When he left he's Registrar said "Sometimes people can respond badly to Prednisone with muscle fatigue." Finally I felt we were getting somewhere. If that's true then I should be muscle-fatigue-free within weeks and kicking goals. Yes? Your thoughts: If you got this far then thanks for reading. I really can't believe I had this conversation. It's upsetting on many levels. Heaven forbid I mentioned eating extremely well to help treatment and he said "diets are all baloney". If you have any insights on this type of muscle fatigue and its possible causes please let me know. Love to you all. Take care.

Sounds like you should explore your options with your choice of doctor. If I have learnt one thing from this forum, it is that the support and understanding of your doctor is key to being the best you can be. Don't let this doctor question how you feel. Find someone else to manage your ongoing control of this disease.

I totally agree with lyngriff. Your onset symptoms were exactly like mine in 2008. I only took 30 mg of Prednisone for several months and then got down to 25 for a month and 20 for a month and so on until I stayed at 5 for a year or so. Now I only take 5 mg for 4 to 5 days if i know I will be doing something a bit taxing. It does help. But getting totally off is no fun. That is a miracle drug, ashamed it is so hard on our body. I had the muscle weakness as you described and the overall fatigue. Yes, the muscle weakness and/or fatigue must be part of it for some of us. I had muscle fatigue to the point where I would just turn to jello and fall in the floor! The mechanics hands was terrible. I wore the finger cots (rubber thingys that you roll on your finger!!) while doing chores as getting them wet for me was excrutiating.That was not comfortable either but.....you gotta make choices. Vaseline and bandaids at night. You know your body better than anyone else and you know how to read your symptoms. Don't let anyone try to be callous to you about this. It is a nasty disease with many variables and each one of us is different. I have been in what my dr calls "remission": for 3 years. So, there is hope for a reprieve for you and I wish it comes soon. You must rest as much as possible. It is hard to do as I too, am a bit hyper, but you must learn to just exhale and relax. I don't know where you are but I am in East Texas and have a wonderful doctor. If I can help you in any way, just let me know.Take care of you.

Hi SydneyASS I agree with these 2 as well. I have gotten back most of my strength, but the biggest part of the illness that affects me is fatigue. I can walk pretty well now, but for short distances or periods. I must rest often.... As for the ck levels, they are merely an indicator. Low ck levels does not mean that there may not still be issues happening with the muscles. I do flair on occasion, but my ck's never go above 50 due to the meds I take. I am currently on 20mg prednisone, along with my methotrexate, IVIG and Ritux. The doctor is somewhat correct about the prednisone causing muscle fatigue/damage, however that is generally from long term use and high dosage use. Normally this does not happen in such a short period. Your doctor MUST be your greatest advocate. If they are not, then it may be time to get a new one. You know your body, and what is normal/right. Although there is not alot know about ASS, we do know that it is unpredictable, and can be different for everyone who has it. Keep fighting, rest often, and stay positive. It does get better.... God Bless and Keep Up The Good Fight. Wayne

1. You know your body best. If you say your muscles aren't working right and are fatigued, you're right. 2. In my experience, rheumatologists ask you about your symptoms, then dismiss them because you "don't fit the disease profile." I have fired several after going round and round at these useless appts. When the last one did this routine I got so frustrated that I paused, looked her in the eye and calmly said "every appt you ask my symptoms, I report them to you, you dismiss them because I don't fit the disease profile. Just because it doesn't fit the profile doesn't mean they don't exist. I'm not asking you to make sense of them or to have all the answers but when I report my symptoms, I DO expect you to acknowledge it, track it, and over time be a detective with me in understanding this rare illness." I was shocked when she said I was right and apologized. She is now one of the key people on my medical team. 3. I had rapid onset of ILD due to the OJ subtype of ASS. Supposedly it is the form in absence of myositis. Early on I experienced muscle fatigue. My lungs are really slow at diffusing oxygen and this leads to muscle fatigue. I also have muscle weakness any time my prednisone is 60 mg or higher. Even when I improved and my prednisone was low, my muscles felt slow to recover and lacked endurance. I never had an elevated CK. 4. Three years into ASS my hands and forearms became really weak. I felt a constant burning pain in all the tendons along the sides of my fingers, and in my wrists and forearms. I couldn't turn a doorknob, button my shirt, tie my shoes, lift a fork to my mouth. They were certain it was anything BUT poly or dermatomyositis because "these diseases attack the large proximal muscles, not the small, distal ones." Then my CK started to rise but only into the 800's. They put me through tons of painful tests. I finally convinced them to do an MRI of my arms and sure enough, all the little muscles lit up full of inflammation hot spots. We used this to guide a surgical muscle biopsy in my forearm. This tissue sample confirmed dermatomyositis. 5. Even now, 5 years out and mostly stable (due to a cocktail of pred, cellcept and rituxan) operating this version of my body is a constant juggling act. If I carry a grocery bag or drive too much, my arms become noodles and then may be useless for a few days. After a day of stairs or walking, I trip easily and my gait changes. Even the act of carrying a cup of coffee home from the cafe as I walk 8 blocks across the neighborhood can be enough to render my hand useless.(thank god for spill proof lids and backpacks!) My Ck levels are in the normal range, pred is low, I use supplemental oxygen and yet the fatigue and weakness comes in easily. 6. None of us are faking it to get out of work or chores or living our lives. We want to be well. 7. Please be extra careful with that fast prednisone taper. Going too fast can cause extreme fatigue, painful joints, dark moods, exhaustion, etc. as your body can't adjust so quickly. I recently saw a good article on tapering and will look for the link. 8. I'm not sure my long winded rant is helpful but more than anything I want you to know you're not crazy, your symptoms do exist and you know yourself best! What you need and deserve most is a doctor who believes you. Please do keep us posted on how things go. My best to you.

I think it might be time to find a new specialist. I am so sorry to hear that you have to deal with this disease but one thing that can make the journey as smooth as possible is a good specialist. We are actually moving towns in a month to access a specialist who knows this disease very well and my only regret is that we didn't do it sooner. My husband got better initially and then went down hill again to his worst point ever and I hate to say that a lot of the decisions made that led to that point are similar to the ones your Rheum. is making with you now. Best of luck with everything and if you want to know more about the muscle fatigue side of things or even some specialists close to you that know about ASS, I would really recommend joining a Facebook group called 'Myositis Support Australasia". Between them and this group here they have literally been life savers :)

Hi Sydney ASS I agree with everyone and the Facebook/website Myositis Support Australasia.com.au is worth having a read. I would be asking if you also have Dermatomyositis with your Anti Jo 1 and ILD. I must say it is normal for me to be active for a few days and then be absolutely out of it for a day or two. My medication initially after an acute onset was 1000mg Prednisone, IV cyclophosphamide, IVIG, IV Plaquneil, massive doses of Fentenel and on a BiPap breathing machine plus many others that I don't remember. I was in ICU a month and this was followed by another 8 months in hospital. Your muscle fatigue may be more indicative of the Dermatomyositis part of ASS. The. Imuran may not be strong enough for you as it is a mid strength drug. Do you still have the mechanic hands?

Hey I'm only a few hours drive from you SydneyASS. My diagnosis is the same as yours. My ck is back to normal and the muscle side of my condition is considered to be in remission, but I continue to suffer with muscle fatigue and pain. After diagnosis I was on Prednisone and had no pain. I was weaned off Prednisone in February this year and the pain and fatigue have returned pretty much how you describe it. I've been medically retired. My lungs were my most serious issue so I'm under a respiratory physician. She's had two ASS patients previous to me

Hi, Sydney. I don't have much to add except just know that it is possible to take much higher dosage of Imuran. I am no doctor and each individual and situation is different, of course. Just for reference, I am 160lb (I forget kg conversion :P )female on 250mg of Imuran daily. Take care of yourself. Brandy

Hi Sydney ASS I am experiencing similar problems. I experience a lot of lower back and pelvic pain. It's worse when lying flat or sitting so as a result my sleep is disturbed and I'm even more fatigued. Lying to standing is the most challenging thing and turning over in bed. I explained to a locum rheumatologist the other day how I'm afraid I won't be able to get out of bed one day. He replied that because my CRP was not raised he felt this was nothing to do with my illness. It was a mechanical problem and if I went for physiotherapy I shouldn't mention my illness as this would just confuse the issue. I don't understand how my CRP is not raised however I still have ILD, Heart failure and skin problems but the rest of me couldn't possibly still be affected! I hope that when my trust finally appoint a permanent Rheumatologist he is a bit more switched on. Katrina x

Thanks everyone for your insights and support!!! Its wonderful to be able to turn to you all when the medical community can be such a pain in the ASS : ) It appears there's medical research that supports the idea of persistent muscle fatigue and anecdotal evidence from us who live with it. I came across a 2013 medical research paper on ASS we could refer to in our conversations with specialists (http://arthritis-research.com/content/pdf/ar4332.pdf). At the bottom of page 5 under "Long term functional outcomes" it says "The long-term functional outcomes of the 73 remaining patients were persistent muscle effort fatigue with moderate decreased activities (HAQ score < 0.75) in 55 patients, marked decrease of muscle weakness with severe reduction of activities (0.75 1.5)." I'm hoping my Rhuemy is right and it's just the Pred!! Trust me, I'll be cheering. So I'll follow his advice for now and see what happens in the coming 6 weeks as I'm weaned off. However, thanks to your feedback and advice from my GP and family I'll put the feelers out for a new Rhuemy who will bother to listen. KellyB if you could post that link on tapering off Prednisone that would be great. I have already had 2 experiences of dark moods when the dose has changed so I find it concerning he has suggested such a rapid tapering. By the way, I loved your direct conversation with the Rhuemy after she dismissed your symptoms. I think I'll use it : ) oh, and arms becoming "noodles" is a great image. I worry that my noodle arms shouldn't be driving at times. Ellie, when you say my Rhuemy is repeating the circumstances that lead to your husbands low point what do you mean exactly? Did he get well and then was tapered off Pred quickly which lead to a worsening of the situation? I hope the new town and specialist is awesome for you both!! Cheers : ) Alexgirl, thanks for the FB reference and yes I still have the mechanics hands but better that pre treatment. BarbieRose, where are you located and thanks for your insights. Kat, the locum Rheumy sounds like a goose : ) Its not his call to tell you what you should and shouldn't say to another practitioner, in fact how can the physio really manage your case without your whole story. Best of luck! Thanks Lyngriff, Melissa, Weiner and Brandy for taking the time to share your thoughts with me too - you're all awesome!!! Love to you all : )

In the current issue of The Rheumatologist Rehabilitation and Myositis Physical therapy to manage inflammatory muscle disease by Michael O. Harris-Love, DSc, MPT http://www.the-rheumatologist.org/details/article/983849/Rehabilitation_and_Myositis.html Prednisone. Lots of good tips and other resources at end of article. http://www.cssassociation.org/patient-stories-reader/items/reducing-steroids-while-on-a-low-dose-activating-the-adrenal-glands-by-marian-mesker.html Also, the Myositis association is having a live doctor lead discussion on July 25th regarding the use of prednisone. You can email questions in advance to have them answered. http://www.myositis.org/your-myositis-community/live-discussions

I'm in Orange

Hello all, I was diagnosed early in 2007. My mechanics hands were one of the worst things. My rheumy put me on dapsone. She said it would help with healing the skin and it has a very low dose antibiotic to keep them healthy. Now I'm not one who usually reads the paperwork that comes with my perscriptions, mostly because I don't like to look for side effects, but when I was unpackaging the meds, the paperwork fell out and a word caught my eye. The word was leprosy. That is what dapsone is usually prescribed for. That was a bit off putting at the time, but since the meds work I'm not going to complain about it. As a matter of fact, my husband and I joke a bit about that. Along with the meds I've been using a cream that I found that is fantastic. It is O'Keeffe's Working Hands. It is parafin based, has no perfumes or alchohol, is not oily and works immediately. I don't know if it is sold in Australia, but I know you can find it on-line. And for the Rheumy who tried to tell you what your symptoms should be, get rid of him. If your doctors won't listen to you, they can't help you. I will keep you in my prayers, along with everyone else in our group. Terry

Hi again : ) Yes that's exactly what happened, the Pred was just lowered way too early without giving other medications a chance to reach their full potential. The last time we saw him he wanted it lowered again, we just smiled and nodded and then kept it exactly as it was. We see the new specialist next week and will leave that up to him being as he is familiar with ASS. But things are really looking up at the moment so that's a great sign. I have to say too, that if you haven't already I would start keeping a food diary. We have been able to remove entire symptom subsets through the addition or removal of certain foods. Cramping for example was one of my husband's worse symptoms and he now never gets it :)

Ellie Can I ask which specialist you are seeing. I am in Brisabane and see one that is based in Carina. Is yours in Carina or Greenslopes without mentioning any names.

Hi TBear I was on Dapsone in hospital but after a few weeks I had the reaction to it whereby your neutraphils disappear. Apparently, my went from 21 to .05 in two weeks - which led to IV antibiotics and isolation in hospital, bone marrow test for Leukaemia and then a de-sensitised program for Bactrium which I was mildly allergic to.

Alexgirl, Sorry to hear that. It has worked wonders with my hands, and hope it will work for some who can take it. My hands were so bad that my Rhuemy took pictures of them to show people exactly what Mechanic's Hands looks like. She said it was a better example than anything in the textbooks. Isn't it wonderful that we can help the medical/scientific world with our ailments?

Hi Alexgirl I have a question for you. Did you develop any other reactions to antibiotics since becoming ill? Hope your day is great. Thank you. Csarv

What do mechanic hands look like?

Mechanics hands are when the skin on the lateral edges and tips of your fingers (usually starts with index finger and thumb) become very rough, cracked and dry. Can be very painful and takes a while to clear up.

Hi Csarv, Luckily I have not had any other reactions to medication but I did also contract a deadly infection that thankfully responded to large doses of Bactium.

lildreamer the good one we will be seeing is at Greenslopes :) Is that who you are seeing?

Lildreamer, Ellie and her husband will be seeing my specialist at Greenslopes. I think I gave you his name a while ago.

Hi Alexgirl So glad to hear you have had no other issues. I'm sorry you had to endure a nasty infection like that. The reason why I asked is when I became sick I developed an allergic reaction to several antibiotics and was put on Dapsone and had a similar outcome. I too have a mild reaction to Bactrim. It is sad we are all so similar in our journeys,yet so different in our disease path. Take care of yourself and those you love. Csarv

Cheers. I am seeing the one in Carina. I will be interested to know what treatment plan he recommends as he is an immunologists and mine is a rhumi. Good luck and keep me posted.

On the subject of what Mechanic's Hands looks like, not only is it the edges and fingertips that will dry out, crack and bleed, but the skin on the palms and heels of the hands will thicken and dry out. Mine were so bad at one point that all I had to do was bend a finger and those fine lines that run from the tips of your fingers to you plans would just pop open and bleed. I type for a living, so you know how badly this effected me. Especially when each and every finger had at least one split on the tip. Some days it felt like the keyboard was made of knife tips. But thanks to medication and the perfect hand cream, I don't have any of those issues anymore. I pray for us all each and every day. Keep fighting and doing what you need to do.