Just wondered about people's opinions regarding steroid doses, and whether they twiddle with their doses according to how they feel on a certain day. Eg, do you increase by a small dose (5mg) if you feel particularly stiff one morning? Would you consider it safe to take a larger increase (20mg) for two days and then revert to your usual low dose (5mg) if you are suffering a bad spell? Just curious...I'm finding things hard at the moment. My Imuran is not working and I'm reluctant to increase my prednisolone permanently as it's taken me so long to get the dose down from 40mg to 5mg. Your opinions and experiences would be valued. Thank you Alison

Good question, Alison! Greg

Hi AlIson, I take prednisone and have taken it for 18 years at various doses. I am always fearful of increasing the dose. I dropped from 100 mg IV in February to were I am today at 6 mg by mouth and it is hard decreasing, but my drop is very slow because my pain increases with every mg dropped. I am currently dropping 1 mg every other month and am doing better. My sed rate is up to 21 .They prescribed volteran gel to apply to my hands were most of the pain is. I am also on immuran. How long have you taken it? Can I ask what symptoms you have that says the immuran is not working? It is such a hard call as what to do with the drugs that are suppose to make our lives better, I have never played with the dose. I want to be off steroids, 18 years is a long time. It is my current Rheumatologist's goal to wean me off steroids. Feel better, Barbara

Hi Barbara My consultant says that as my CK levels have been creeping up, that i should have been able to lower the steroids and the Imuran should have held my CK stable and kept symptoms at bay. But as the steroids have been lowered, month by month my CK has crept up. My hands are split, rough and painful. My muscle strength is worse (especially in my thighs) and the flexibility of my muscles has decreased too. My hands are inflamed and making a fist is stiff and sore. And the fatigue is overwhelming again. Feeling very old and tired (and sorry for myself!!) at the moment. I have been on Imuran since 1st January, and had a good CK in February of 79, but was on 25mg steroids then, but I've been reducing the steroids by 2.5mg every month and have seen the CK rise each month, this week it was 1583 I'm due to start Cellcept soon, and have increased my steroid dose to 7.5mg to try to help the symptoms, but really don't want to take a larger dose permanently. I have such a love/hate relationship with prednisolone...it's power is amazing but it's side effects are horrible. Best wishes Alison PS. I've noticed lots of you mention your SED rate; what is this a measurement of?

Hi Allison, It is my husband who has antisynthetase syndrome, not me, so I have never been on pred. I am a resistered nurse though, so I am going to jump in here. I think it is a very bad idea to go up and down on your prednison, especially if you take 20 mg for a couple days and then go all the way back down to 5 mg. Your body does not produce it's own prednisone at all when you take it artificially-in the form of a pill. So you may feel better for the couple days after you take the higher dose, but you will feel way worseby about the second day you only take the 5 mg dose! Also dropping 2.5 mg a month was probably way too fast. My husband's doctors recommend dropping 1 mg every 1-3 months after getting down to 20mg. This gives your body a chance to start producing it's own and allows you to stop the taper when you start feeling worse. You may never be able to get off the predisone. It is a drug with lots of side effects, but I think you have to decide what is worse, the side effects of the pred, or the symptoms it suppresses? Also, I believe that predisone sparing agents like Cellcept work better if your symptoms are suppressed when you start taking them, so you may want to talk to your doctors about increasing the dose of prednisone (and getting your CPK level down) before you start the Cellcept. Just my thoughts, Bev

Hi Alison, I have times when I feel sorry for myself too. I call that time "Pity Party Time". I sit and cry until I feel better of fall asleep. Coping with this illness is rough. Sed Rate is short for sedimentation rate, some places call it an ESR which is erythrocyte sedimentation rate. same thing, it measures the amount of inflamation in the body. I do not see a CK on my labs results so I will ask to have one drawn next visit, which is 3 weeks away. Today is a pretty good day for me,not too hot about 80 degrees and low humidity. I pray you have a better day. Take care, Barbara

Alison - I have read from other experiences that tapering prednisone should be very methodical - it should never be done too rapidly. I believe that even 1 mg at a time is appropriate when you are lowering from 10 mg. If done too quickly it can cause severe side effects. I am sorry you are going through this and am sending positive thoughts your way. Regards D.

Thank you for the feedback and advice. None of my consultants have advised about dropping the pred as slowly as you all suggest. I was originally on 40mg and was told to drop 5mg a month, I decided myself to lower it by 2.5mg a month as the dose got below 15mg to try to avoid any flare ups, now it seems maybe that was too fast. It's so frustrating to trust and follow the advice I am given and still find myself struggling. Bev, I will ask about getting the inflammation down first with pred before starting the Cellcept, thank you for the help, and for the logical advice of why I shouldn't mess with the dose Barbara, I was feeling left out by not having a sed rate!! So I have looked into my results and found an ESR, thank you. Take care Alison

Hi Alison, I looked back and did not see what dose of pred you were on now. I know with my own story that everytime I go below 10mg my body aches and joint pain is horrible. I am currently on cellcept at 3g/daily and my pulmonmologist said it is doing nothing for my muscles, lungs, and joints, but my mechanics hands are all but gone. I have no cracks and very few rough patches on my fingers. I also live in a warm, humid climate. I just had my first week long infusion of immunoglobulin (IVIg) and can already tell a difference in my joints and muscles. The doctors are going to transition me to imuran half way through my six month IVIg course. Did anyone ever explain why the imuran wasn't working for you? No one has explained why the cellcept hasn't worked for me. I know they proceeded to IVIg when I became resistant to the pred and cellcept. Good luck with the cellcept, I hope it works for you! Also I found these arthritis gloves online that are made of the same material as a wetsuit for scuba diving. They compress my hands and keep them warm. They REALLY help with the joint pain and mechanics hands. Maybe you could find them in the UK at a scuba diving shop or on the internet.

Hi Stephanie I'm currently on 7.5mg pred and reluctant to increase, but think it will be necessary as the inflammation in my knees is making walking, especially stairs really tricky. I phoned my rheumatology specialist nurse for advice today, but she wasn't in and tried to explain to the other nurse who answered the phone...her reply was: "I don't think there is any point in us having a conversation, as I don't think I am going to understand or be able to help you...i'll get the doctor to phone you back". I think they see Anti Synthetase Syndrome on your notes and just give up! So I'm waiting to speak to my local consultant and ask about the pred. I think an iv of methyl prednisolone would be helpful, but it takes so long to be arranged that i'll be crawling into the hospital by then! No-one has said why the Imuran hasn't worked, same as the cyclophosphamide didn't work either previously. I think it makes this condition frustrating, that there isn't a treatment that suits everyone. My consultant in London has said he might give me IVig (he mentioned 5 consecutive days of treatment). It's great to hear that you are feeling positive results with it. Thanks for the tip about the gloves; I will give them a try, I have found some online. Take care Alison

Alison, I am so sorry for all you are going through. Doctors can be such a challenge! I have been blessed by having a sister who is a nurse practicioner (almost a doctor but she cannot do surgeries) who has gone through this journey with me every step of the way. She is very assertive and won't allow them to give me the run-around. My first rheumatologist looked at me and said I had rhuematiod arthritis and moved on. He wasn't even willing to think of anything else. My first pulmonologist told me to find someone else because he had no idea what was wrong with me or how to treat it. I finally found a *young* pulmonologist who is very bright and willing to research and keep me in the loop. He finally got me to my present rheumatologist (also a young doctor) who took one look at me and asked, "Have you been tested for Jo-1 antibodies? It looks like you have antisynthetase syndrome." I am apparenty resistant to cellcept and prednisone, so they moved on to IVIg. I would suggest that you persue the IVIg infusions. I know my sister would say to make a pest of yourself. I am not all that forceful, and when I feel terrible I am even less so! I know it is hard and I am so blessed to have her advocating for me. As an American we are encourage "make noise" and step on toes when you need to. Try to think of yourself as a loud American the next time you deal with someone who tries to brush you off! : -) My prayers are with you! Stephanie

Thanks Stephanie I know what you mean, some days I just cannot be bothered to make a fuss, but then the next I will think, no I'm not having this, and fight my corner. Perhaps you could lend your sister out; she sounds like a gem. I go back to London in a month to have an MRI and review, so i'll see what they say about the IVig this time. I hope you continue to do well, keep us posted Take care Alison

Bless you all. MAKE NOISE and be your own best advocate. But I also recommend finding someone, even if they are not a medical person, to stand beside you through this. This is a horrible insidious disease that is so often misdiagnosed or the doctors just give up. My daughters first rheumatologist told her she had fibromyalgia and rosacea!! I knew it was more and we stepped on toes and pissed people off till we got answers. I have taught her well to be a mouth about her health but sometimes this disease seems like it is winning and it is too hard to fight alone. And that is when you need someone to stand beside you. Go armed with as much information as possible and NEVER TAKE NO for an answer. I am praying right now that my daughter lives through this as she is now unable to speak for herself. HANG ON. We are all here for you.