Recieved rheumatologist letter and conclusion

[Cooper02]

Hi all, here is an update.

I received my Rheumatologist letter and the conclusion was Fibromyalgia as expected.

He is without any doubt that i have fibro and with my history believes i have been undiagnosed since 2015. He reported that the introduction of Pred at 15mg was no more than an effective pain killer and also the reason why I could not successfully taper down from 15mg.

The fact that my inflammatory markers have not changed also indicates that this was never PMR.

The plan is to reduce my steroids by 2.5mg every two weeks down to 5mg, then 1mg every week to zero. At the same time, my G.P is to uptitrate a neuropathic agent (his drug of choice which is pregabalin whatever, or Gabapentin-whatever is cheaper I suppose)

Do I believe him and do I have a choice, most definitely not, but what can I do?

All I can see over the next few months is increased pain, potential side effects of the new meds, adrenal complications, and returning to a debilitated state like before. I hope I am wrong.

Feeling a bit deflated at the moment TBH

Sorry to come across so negative and moany

[PMRpro Ambassador]

Don't blame you - he really doesn't know much about PMR does he!! So many wrong statements.

Pred is not "an effective painkiller". Unless it is inflammation causing the pain. Fibro is not inflammatory.

15mg is the bottom of the range of starting doses, if you need more to clear things out, it will be very difficult to taper.

My inflammatory markers never changed - but a world expert in the field thinks it is most likely to be PMR, it responds to Actemra to reduce the pred. Not fibro ... Some people do not develop the acute phase response - that is well known amongst true experts.

What can you do - find an unbiased rheumy and you know who we'd suggest.

You may NOT have PMR, everything is possible. But his reasoning is flawed.

[Longtimer in reply to PMRpro]

I am in the same position as you, not told it was never PMR, but last almost 2 years told I now have fibromyalgia. No way would I lower as quick as you have been told. I have been at 5 mg a long time, started lowering over a week ago on very slow reduction, even half mg has big affect, now going to drop 1/4 mg, can cut half easy with a snipper, do it your way, have to consider the adrenals! Good luck on the struggle you are not alone…..🤞

[Cooper02 in reply to Longtimer]

Thank you. i am am concerned that the reduction regime is too fast and i will see what my G.P says and if he will support me to do it slower, especially whe i get to the lower doses

[Longtimer in reply to Cooper02]

Yes, the lower the slower!

[Longtimer in reply to PMRpro]

Sorry other post meant for Cooper02 tried to change it, not successful

[Cooper02 in reply to PMRpro]

Hi,

I have spoken to hubby about a 2nd opinion and will look at this. I am waiting for my doctor to pick up on the recommendations from the Rhuemy first and insist on a face to face. This might help, at least with the reduction regimen for the steroids as i am concerned it is too quick especially at the 7.5mg to 5mg.

[Longtimer]

Sorry, posted a reply tp PMpro by mistake which was meant for you.....bit dopey today!

[PMRpro Ambassador in reply to Longtimer]

Doesn't really matter - as author of the post they are notified too.

[Longtimer in reply to PMRpro]

Don't know what my name is now I'm lowering!Still very cold here, is it any warmer yet where you are?....my OH's birthday end of next week, usually sitting in tshirts in the sun!......got the heat on indoors.....my saying is....too old to be cold!

[PMRpro Ambassador in reply to Longtimer]

I doubt it - been warmer in Scotland than here! Was supposed to be better over the weekend but it is late arriving! I usually have the heating off early April but still need it this year! We had a couple of short spels where it was up to 25C then it was back to not even double figures the last couple of weeks. And not even sun to take the edge off -day after day of clouds. Horrible!

[Longtimer in reply to PMRpro]

Sounds exactly as it is here....so miserable!....everyone tal king about it how fed up they are with it....depressing!

[PMRpro Ambassador in reply to Longtimer]

We had had a few glorious days but few and far between

[Sophiestree in reply to Longtimer]

too old to be cold! Love that

[Abcd123455]

I’m still waiting for my review but know I’ll be told the same. Re: Pregalin or gabapentin, please look them up and tell Gp your preference. I was on gabapentin for a long time after slipped disc and to be honest it is great for pain but had a massive impact on my memory. Had to come off after I nearly burnt the house down as forgot a pan of water on the cooker! My daughter had a significant injury and took pregablin and again great for pain but had weight gain and really struggled to come off it . Sure effects are different for everyone though. Also, my dog is now on gabapentin for her hips 😀

[Cooper02 in reply to Abcd123455]

I have researched both meds and i will not be agreeing to starting them, initially anyway. When i start to reduce my steroids i will wait to see how bad the pain gets. I just dont think trying to do the both together will be pleasant

[Longtimer in reply to Cooper02]

Tried both of those mentioned, not good.

[Pixix in reply to Abcd123455]

I tried both for my fibro, & the side effects were bad, especially Pregabalin. But I think you need to keep an open mind, as these drugs help thousands of sufferers worldwide to have a better life! I haven’t found any drug that works like steroids do for PMR, but perhaps Pregabalin or Gabapentin will help you! There is a ‘fibro community’ forum on health unclocked, but not as active as this forum. I don’t think there’s much to say about fibro, or ask, maybe!!

[bookish in reply to Pixix]

Hi, just to say I've always found the fibro forum quite active, although not all have an open mind......Plenty worth asking and investigating as a variety of causes and misdiagnoses possible, what helps one doesn't necessarily help another. I was on Gabapentin for years for a misdiagnosed B12 and folate metabolism issue, so it got worse (Gabapentin depletes folate). I have learned never to assume B vits are ok, or that usual testing has ruled out a deficiency, as it cannot. Cheers

[Pixix in reply to bookish]

interesting re folate & Gabapentin, I had no idea. However the timing of my folic avid being low & having to take tablets for six months didn’t coincide with the time I took Gabapentin! Good to hear the fibro community is active, I didn’t mean to say anything negative about it!

[bookish in reply to Pixix]

No problem! 6 months is quite a long time to be on high dose folic (5mg presumably). Do you know what your B12 was doing, as deficiencies generally go hand in hand and B12 should be treated before folic so that the problem is not made worse. And some don't do well with folic anyway but are better with folinic or methylfolate. Cheers

[Pixix in reply to bookish]

My lack of folic acid was very big…the blood tests showed it well. I had been suffering from even more bad fatigue than usual, & some other symptoms. I guess the B12 was fine, but I will have a check, thanks for telling me. I had some done two weeks ago & 3 out of 5 were marked as no good, speak to doctor! I’m waiting to speak!!

[bookish in reply to Pixix]

It is important to look at full blood count, folate and B12 from the same blood draw and supplementing folate/folic can make the haematological picture look fine, masking the B12 deficiency. Many doctors still think that B12 deficiency is a haem issue and that if you are not anaemic and don't have macrocytosis (enlarged immature red blood cells) then you are not deficient. Blood ok=B12 ok. This is incorrect - unfortunately B12 def. can be neurological and not haem, and even in the autoimmune form (Pernicious Anaemia) you do not need to be anaemic or have macrocytosis, so it gets missed. Try to get copies of all your results, not just the new ones, so you can see what they have been doing over time. It can be really helpful and doctors generally don't have time to do that kind of thing. Good luck getting to speak to your doctor and making some progress.

[Pixix in reply to bookish]

I have online access to my blood results for the past ten years. My folate was fine until a year ago. Thanks for the info! S x

[bookish in reply to Pixix]

You are welcome. One more thing (sorry!) to bear in mind - B12 deficiency can cause something called the folate trap, as folate cannot properly metabolise without enough B12. This means that unsupplemented serum folate can look good, even high in range, but you are actually cellularly deficient. Mine did this, which is why I know. It can be another useful sign of B12 deficiency but may well be missed. If you can't use folic acid, that may do the same thing, and serum may come down to mid-range ish with folate instead. My other markers changed too, like MCH, RDW, Hb. I looked at all relevent markers for dates and plotted them on a graph (how sad is that) but at least then doctors agreed that they weren't normal and shouldn't have been changing if my blood had been replete. Cheers

[Pixix in reply to bookish]

Thanks. I’ve never had any problems before this folate issue, so I’m hoping it’s a one off. The tablets worked well, & my result six months later was very different!

[bookish in reply to Pixix]

That's good. Best wishes.

[Pixix in reply to Abcd123455]

I did that without being on either of the drugs!! I was boiling beetroot. Completely forgot, & had nothing to blame…I wasn’t even old…then!

[Abcd123455]

good luck with it all, hopefully it’ll be helpful when you get started.

[Cooper02 in reply to Abcd123455]

thank you

[Numptybrain]

I was on gabapentin 900mg 3 x daily for years, I eventually thought enough was enough and weaned myself off them completely. I was originally put on them for painful swollen feet, like walking on broken bones at the time. I hated the side effects.

Take care

Wendy xx

[Booklover57]

hi I am so sorry this is not what you hoped for. Have a look at my bio, there are some parallels with yours. I was able to taper from 40mg prednisolone once the gabapentin kicked in. I am still on 600mg gapentin, can live with the memory issues and sleep very well. But my original symptoms were not exactly the same as yours. A second opinion might make sense. All the best x