PMRGCAuk
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fibromyalgia

HI All

Just a little update, if anyone has seen my posts about my Rheumy they may remember he gave me no time and did not listen.

Moving on I have seen my new Rheumy today and I was fully examined, listened to and not rushed.

She agreed with the diagnosis of PRM/GCA but also thinks I have inflammatory arthritis and Fibromyalgia.

I have come off Leflunomide, due to upset tummy so the plan is firstly to put my on amitriptyline, mainly to help me sleep but to also ease aches and pains and also azathioprine which I am a little more concerned about.

Any comments or advice would we welcome. I have had BT today to see if I am suitable for the Azathioprine so will be on amitriptyline first for a couple of weeks.

If you Rheumy is awful, change! Whether these meds work or not, at least she seemed to listen and understand.

Best wishes to all

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Glad to hear this Lesley. No experience of your new drug though. It was quite a complex diagnosis in the end. She sounds really good, gold dust!

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Hi Lesley, I struggled initially (about 10 years ago) to get a diagnosis.

In my NHS career I did work for a while in rheumatology. So when I started getting symptoms I knew I needed to get it sorted out. (We have a history of RA in my family). My ESR and CRP were very raised and my GP gave me Prednisolone which immediately helped.

However, after being referred to a Rheumatologist, I struggled to get a diagnosis. Only after paying to see him privately did I get a diagnosis of Fibromyalgia. Before later being diagnosed as well with PMR and then GCA.

So like you, I was given Amitryptyline to help with nerve pain. This I found helped me sleep but I struggled the next day with exhaustion. So I only take this as and when I am really in need. Azathioprin was for me the hardest medication to tolerate, my stomach reacted as if it were food poisoning desperately trying to clear it out of my system from both ends. I was told to keep taking it but after 6 days I gave it up. I have since tried Leflunomide, Methotrexate plus many other steroid sparing agents but I react so badly I am stuck with Prednisolone. Thankfully I now have a really good Rheumatologist (the original one retired).

Hope this helps.

Take care.

Margaret x

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It really does mgt - thank you. It would appear I may have stomach reactions as you do so am very reluctant to try the azathioprine - I have a phobia of vomiting!

I only took 5mgs of Amitryptyline Last night - definitely slept better but feeling a little bit spaced out - can’t imagine how I will cope with the suggested 20mg dose!

Thanks again for reply I hope you are doing well 😊

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So you are on pred? How much did you start with? How much of the pain went away?

But kudos to a doctor who listened!

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Hi PRMpro

Started on 40mgs, I was pretty much pain free. However, during the last two years, pain has changed, and I seem to have additional problems, awful brain fog (Ihad put down to steroids). Now on 8.5 and despite a few blips on the way feeling relatively pleased being on this lowish dose. The medic's don't seem to agree with me and keep trying me on sparers, I have tried, unsuccessfully, Methotrexate and Leflunomide, I am extremely reluctant to start the azathioprine.

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Brain fog is as much part of PMR as any other autoimmune disorder. If you were pain-free on pred, even though that is a pretty high dose for PMR, you didn't have fibro then, it does not respond to pred though there are doctors who will try to tell you it does.

What was the last dose where you were as pain-free as you were at the start? That is your guideline.

If mtx and leflunomide haven't worked - I would refuse to try aza. There is no real evidence it works in PMR to reduce dose. And possibly, if they keep trying to push a "steroid sparer", another opinion?

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Thank you PRMpro - I guess I have not been pain free for about a year so that would be the late teens on preds, but, the pain also changed and was not the same areas etc. I acctually asked my old Rheumy if it mightbe fibro, but he ignored me as usual. This time I didnt mention it but it was the conclusion they have come to.

Thanks, thats what I think I am going to do, I really don't fancy bringing on sickness and I am sure with my tolerance so far that is what will happen.

Thanks as always for your input, always useful.

I hope you are keeping well

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Even PMR pain changes - but what you probably need to do is go back to a higher dose to see if it improves things. If it does it isn't fibro.

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I did go up recently, my temple pain improved but not my body (well not all of it) Hence I think the Rheumy's thoughts .....

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