22 months after TIA/GCA diagnosis

[ragdollcat4]

I wrote to you on 18/6/19 as I was absolutely panicking, nobody seemed to know what to do and the general correspondence became an enormous help, and now, again, I write for advice.

At the beginning I was tried on Atorvastatin 20mg,clopgrel 75mg, an infusion of MMF 250 at one point and finally settled with prednisolne 40mg tapering. The first Rheumy said she didn't know what was wrong. The Professor (second opinion) said he didn't think it was GCA or Lupus. My GP felt it wan't PMR. All said get off the steroids a.s.a.p.

I have had scans/,MRI/Xrays/ultra sound/ENT checks and many many blood tests nothing shows up . I am now off steroids for the last 2 months (I had every side effect there is) and now 3 out of 4 tendons have torn on my left shoulder and the same is happening on my right shoulder and I can feel my knee beginning to go. I have a lump in my breast and am due to have that checked next week. I don't think it is cancer I feel it is something to do with the steroids in some way. I get sharp headaches on the left,back of my head and I am getting intermittent arthritis in my fingers and toes. Apart from this my core body feels fine. I am not overweight and I eat and drink properly and I exercise because I like it. I have no underlying heart/lung problems. I am 84.

Is there anything I can suggest to my Rheumy (second one- not the Professor) that I can try, or what might be happening as everything is coming to stop. What can I do? You suggested in 2019 contacting Rod Hughes in Chertsey but it is too difficult to get there and probably too expensive.

[PMRpro Ambassador]

I doubt there is anything else any of us could suggest - this a PMR/GCA forum, that is our speciality, together with pred, and if they have all been rejected I fear we haven't anything to add to what was said last year. There are 84 listed adverse effects of pred, some more severe than others, no-one gets them all, many get few, a few get next to none. There are very few people who feel the side effects are worse than the disease since most of them can be avoided or ameliorated when you know how - and that is one of our strong points.

If nothing has shown up in other tests, the symptoms fitted and they responded to pred then the conclusion would be PMR. It is a clinical diagnosis of exclusion backed by response to pred. It is impossible to conjure a magic solution out of thin air I'm afraid.

[SnazzyD]

May I ask why they decided it wasn’t PMR or GCA?

[ragdollcat4 in reply to SnazzyD]

What an interesting question. I do not know. I think it was because the symptoms don't line up with what they were expecting. This is the wording from the second opinion (whose speciality was Lupus)... "Finally if symptoms were to recur and it seemed likely that this was GCA then we might consider the use of Tocilizumab which would certainly avoid the possible effect of steroids of mental illness. I think overall I m not convinced that this was ever GCA, however given the symptons and the raised CRP it is very difficult to be certain."

That was in 2019 having started this whole thing in 2018.

Since then I'm off steroids but have now both shoulders found to have tendons ruptured and back to the same old lack of balance,lack of spacial perception and brain fog and arthritis in fingers which is new.. and this week a breast cancer biopsis (which I don't think I have - I think it is all connected with whatever is going on.)

Thank you for listening. It is much appreciated.

[SnazzyD in reply to ragdollcat4]

Good luck. Tricky. I think you need to ask why more persistently or ask what they are basing their opinion on anything, in detail, like what they were expecting. You don’t say that since the Pred stopped your GCA-like symptoms have returned, so it might be a case now of getting all these separate issues attended to. This is always wearing because there isn’t a one stop shop and it’s like going to a garage to fix a wheel, then another to fix the brakes and then another.....

[ragdollcat4 in reply to SnazzyD]

Thank you. Yes, I think your analogy of the car going to the garage to check one thing and finding more is needs to be done and this is what my GP is trying to do - I only hope she doesn't run out of options! I will ask for more detail and why nobody has suggested that the GCA symptoms may have returned.