Myopathy

Just come back from holiday to a letter from the hospital regarding an appointment with a rheumy 2 weeks ago. It was a locum Consultant Rheumatologist that I saw. He says in the letter that the reason I am tired and lightheaded is steroid induced myopathy. He is recommending I am prescribed Methotrexate/Lefthunomide I don't know anything about that stuff. All I know is it doesn't sound very good.Anybody help?

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  • I'll try and get someone who's been down this route to contact you. She is a member on another forum.

    She was told by a rheumatologist that her dizziness and problems were due to steroid induced myopathy. When she finally paid privately to see someone (she's in Wales, they were hopeless there) she was told it definitely wasn't myopathy. She was put on methotrexate at one point and initially was able to reduce the pred dose - and had a major flare so was right back up on the pred dose again. I'm sure she will have a few pointers for you.

  • thanks Eileen

  • Morning King Harold,

    Hello King Harold,

    I'm the lucky soul who was told that my muscle twitches, spasms & falling over were all due to steroid induced muscle weakness. My rheumatologist told me to do pilates to help improve my muscles. Several months & another rheumatologist appointment later, I was falling constantly & struggling to hold a cup of tea, I paid privately to see a Neurologist & my problems were defintely not steroid related. The falls were due to a form of vertigo where calcium deposits settle in the inner ear & that was corrected in 5 minutes flat! The muscle spasms & twitches were Restless Leg Syndrome & that has been helped dramatically by medication.

    As far as tiredness is concerned, many of us struggle with this constantly. Unfortunately, extreme fatigue is part & parcel of having an auto-immune disease. Some people have the good fortune once on steroids to have life return to normal & others don't. Feeling tired after sleeping all night (assuming that you can) & a 'mental tiredness' where you may struggle to do the simplest of tasks are typical. It does improve slowly as the disease gets supressed but in the meantime it can be very difficult.

    The light headedness you mentioned, is that a constant thing & has it come on since you've been on steroids? Lightheadedness IS listed as one of the side effects of steroids but it does not necessarily mean it is the reason for your lightheadedness. The locum rheumatologist you saw sounds rather like mine & everything is caused by steroids or steroid reduction. Ask your GP to do a set of full bloods as there are many other possible reasons, anaemia being one of the more common ones. Low blood pressure can be another possible reason, so ask your GP to give you a thorough check up to exclude any other possible reasons. Sounds silly, but you haven't had varifocals for the 1st time by any chance? They too can cause lightheadness until you get used to them.

    Apologies if you've posted this already, but what dose of steroids are you on now & how long have you been on them? Methotrexate is usually prescribed when you've struggled to get below a certain dose and/or if you've been on preds a long time. I was prescribed Mtxe in January 2013 because after a year on preds, I couldn't get below 17.5mg. I managed to get to 5mg by May 2014 & a year later I'm still on Mtxe & 5mg preds after several flares in the last year when I tried to get under 5mg. I seem to be stuck on 5mg but in all honesty 5mg of preds don't worry me if they give me a reasonable quality of life. Would I have been able to get to 5mg without the Mtxe is anyone's guess.

    The evidence that Methotrexate in itself helps treat PMR is very limited. It is prescribed for us as a 'steroid sparing agent' and it boosts the efficacy of the steroids we are taking so helping us to reduce preds more quickly. Some people experience side effects, particularly nausea, but other than feeling a little queasy on the day I took them, I have had no side effects (or none that I'm aware of anyway). The queazy feeling only lasted for the 1st couple of months & I always take them with food so I can't say I've had a problem with it. Other people take it last thing at night to avoid any sicky feeling when they are awake.

    Your GP cannot prescribe Methotrexate, it has to be done by the hospital consultant. Prior to starting it you should have a chest xray & full bloods done to make sure your kidneys & liver are ok. The dose is built up slowly over several weeks. They normally do your bloods fortnightly for a while & if all is well, the prescribing will be passed over to your GP under a 'shared care agreement'. You will then need monthly blood tests at your GP surgery.

    The reason I asked what dose you were on & how long you've been on preds is because that would be my determing factor as to whether to take Methotrexate. If you have been stuck on a relatively high dose for a long time, then it is something I would personally consider. If you have managed to get to 10mg or under without its help, then I wouldn't. It is only my personal opnion of course. Yes there are side effects to taking Mtxe but there are also side effects to steroids & the higher the dose of preds, the more side effects you are likely to have.

    Hope that helps.

    Margaret

  • I do feel as you say tired and lightheaded some of the time and I don't particularly want to take a chemo drug. My problem has been getting off of steroids I came off them totally for about 6 weeks 2 years ago unfortunately the PMR came back in spades. For the last 2 years I have been trying to reduce but am still now on 8 and a half its steady at the moment so will try to get to 8 in a week or so. I have had so many things wrong with me for the last 9 months (sciatica for 3 months, then after getting rid of that I fell down on some icy mud and strained my groin that brought the sciatica back for 6 weeks I then caught the wretched flu that everyone round here had that took 5 weeks to go) I am feeling a

    bit better at the moment so maybe will see how we go. The last time I rang our GP surgery I was told that all of the gps had left and all we had were locums. I did see one but its not good is it.

  • I know methotrexate is sometimes used alongside and sometimes instead of steroids. My rheumatologist at one point suggested we could look at using it so I read up quite a bit on it and felt that unless I had no other choice, I did not want to use it, and I never did -- still not quite sure why he thought I would need it as my reductions went reasonably well and I am off steroids now two years. Methotrexate can make people feel ill initially, but that often then settles. Some find it very helpful. My sense from checking on the various PMR/GCA forums was that most on it, would prefer not to be, due to side effects. But often there are not a lot of choices about these things. And each individual is different in response.

    In your place, I'd probably want a second opinion on the myopathy diagnosis, as suggested. I think a lot of us feel/felt tired and lightheaded just as part of the overall PMR/GCA experience, too... from a brief description (and of course because I'm not a med professional :) ) it's hard to know what you are really going through. But (as the daughter of a doctor and a nurse) I've learned to question a diagnosis and always want to be sure I really need to have something added to any medication regime, especially with a chemo drug like methetrexate, which is quite powerful.

  • I do feel as you say tired and lightheaded some of the time and I don't particularly want to take a chemo drug. My problem has been getting off of steroids I came off them totally for about 6 weeks 2 years ago unfortunately the PMR came back in spades. For the last 2 years I have been trying to reduce but am still now on 8 and a half its steady at the moment so will try to get to 8 in a week or so. I have had so many things wrong with me for the last 9 months (sciatica for 3 months, then after getting rid of that I fell down on some icy mud and strained my groin that brought the sciatica back for 6 weeks I then caught the wretched flu that everyone round here had that took 5 weeks to go) I am feeling a bit better at the moment so maybe will see how we go. The last time I rang our GP surgery I was told that all of the gps had left and all we had were locums. I did see one but its not good is it.

  • I would strongly recommend that you reduce very very slowly - that will lessen the chance of a flare & the chance of steroid reduction complications. The lower the dose the slower you need to go & the smaller the reduction would be. It takes me about 6 - 8 weeks to make a half mg reduction & I stay on that dose for several months on the new dose. It is the tortoise & not the hare that wins this race. There are various different slow reduction plans that Eileen will be happy to describe, I'm sure.

    Once you get to around 7mg the dose of steroids is about the same as what your body would produce anyway & side effects are minimal. Another reason to reduce really slowly is that your adrenal glands have been suppressed by steroids. It can take time for your adrenal glands to wake up & start producing hormones again.

    None of us wants to be taking steroids but there is nothing to gain by trying to get off them too quickly because as you found out PMR comes back in spades. As you are no longer on high dose steroids, I would be inclined to give a very slow reduction a chance before taking Methotrexate. 8mg after 2 years is not that bad - 4 years later & I'm still on 5mg & I think Eileen has been on preds even longer. There is no set time frame for PMR & GCA. It will go into remission when it decides to & there is nothing we can do to change that sadly.

  • I have actually had PMR since 2011 and most of that time I have been below 10 mgs I have been reducing via Eileens reduction plan honestly I don't know what I would do without her she is more help than any doctor ( we don't have any GPs at our surgery at the moment they have all left and gone where they can get more money) Ta Wendy

  • It is strange - I have had PMR for over 10 years and have been on pred for almost 6 years now but the local doctors are perfectly happy with me being on 5mg and it is always "are you sure it is enough?" not "you must get off pred".

    I had a good 4 years at ABOVE 10mg - I haven't crumbled in a heap. I take calcium and vit D, took 4 alendronic acid tablets and after that first 4 years my dexascan hadn't changed materially.

    I'm really concerned about any possibility of having to return to the UK - the medical care is so good here.

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