Another flare up - saw rheumy - well prepared this time.

Bones, joints and muscles
1

had a very good appt with rheumy last Monday. I was well prepared with question/suggestions and knew better what I was talking about thanks to this forum.

he's concerned about Myopathy as I've been on 40-60mg Pred since last July - apart from 4 weeks on 30/25mg.

As I'm on 60 mgs at the moment, I'm contacting him next Monday as to how I am and he'll lower the dose if he feels it's right. My blood tests are Ok apart from CRP - 109 and ESR 38. He did say though that the blood tests aren't a definitive indicator of wellness & my symptoms have to be noticeably improved.....which they have been only for the last couple of days.

I broached the MTX  (temporarily withdrawn). I was picking up from here and from my own reading that it doesn't play a proven significant part in the treatment of GCA - his reply was that it hasn't been disproven either -mainly because there isn't a relaible body of research/trials to provide information/results.

He MAY ask me to consider trying MTX again when I reach 40mg & downwards but at a lower dose (7.5mg).

However he was taken with my suggestion of Tocilizumab and also explained about there being Botanicals we could also try. (I need to find out more about them).

We're going to move VERY slowly down, even at higher range, this time.

to address the muscle weakness I, had an assessment with an injury rehab specialist this morning and had a very short, gentle session concentrating on thigh & upper arm muscles (all have claudication).

I will be supervised over the next 3 days and assessed again as to how the session is helping  - or not!

rheumy has also asked me to see a physio for assessment to be placed in the pain class at my local clinic -(Pilates based  /individually tailored) . That's happening week after next.

onstantly) high 

re my maybe Kidney problem (CRP -107 & low GFR - 38) - Rheumy has written to my GP requesting a referral to Eurology Clinic to have Kidneys checked - he's not convinced that theMTX is responsible for the above and swollen legs & feet.

All in all I feel we got through a lot at the appt. he knew about all the research info I took with me and knew all the other rheumies involved. He worked with Pros Kirwan for many years and although he did,t know The rheumy supporting Chertsey group, he was very pleased I was going to visit the group next month.

Phew - that's enough for now. Onward & Downwards for the umpteenth time!!! 

Thank you to everyone who gave me the information & confidence to take this latest step and play a bigger part in the appt. .....and my future.

 

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Hello Jean, I was not a party to your past discussions re your condition but just went through them. 

As you have been on the higher end of prednisolone since July last year it's hardly surprising that you want to receive the most appropriate treatment for your recovery. It's also good to hear that at your last rheumatologist appointment you were more proactive in possible treatment solutions. Being armed with information on our condition (I am a PMR sufferer) it liberates us and empowers us. Reading this thread from you I can definately tell that although you still have long way to go you are approaching your journey with positivity and are more cheery in your outlook. Well done you! All the best, christina 

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Thanks Christina. Finding others going through the same highs & lows has been a great support for me.

All the best to you too.

Jean

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Jean, it sounds as though you had a good two-way consultation - it's always comforting when doctors listen as well rather than just dominate.

I do feel a little concerned for you with the thoughts of you having another round of MTX especially as your eGFR at 39 is in the range of moderate to severe reduced kidney function.  However, you would, no doubt, be well monitored.  The same will apply with Toxilizumab but trials are ongoing with this treatment for GCA at present.

You will at least have plenty of opportunity to seek advice from the Prof during the Q&A session at Surrey's meeting next month.  Also, I have a little booklet on Toxilizumab for you.

I certainly hope it's onwards and upwards for you not - good to hear that you're already starting to feel a little better. 

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Oops, "now" instead of "not" in penultimate line obviously!

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Hello Mrs O - I'm concerned too about low eGFR but pleased that rheumy has requested a referral to urologist to see if there's another reason why CRP is always so high and I never have less than ++haematuria - usually ++++! Perhaps that might shed some light on Kidney function??

Either way rheumy is taking a more holistic approach and I like that.

Thanks so much - this is a great forum. Looking forward to meeting

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Jean, I do hope your urology referral comes through quickly so that you can get some reassurance as to what is causing your haematuria.....and possibly your raised CRP which is very high.  I'm assuming you have had various other tests connected with kidney function - there is a test for creatinine and that is usually raised when the eGFR is reduced.  I'm really intrigued as to what sort of botanical treatment your rheumy has in mind for treating GCA, as I expect you are, too.

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My GP is writing a letter today to urologist I saw 4 years ago. My CRP is 107 at the moment - it usually sits around 126! 60mg Pred will bring it down, as will 50 & maybe 40. Beyond that it begins to rise again, so I think something must need attending to!!

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Jean, it seems that whatever is going on with your kidney function could also partly be the cause of your high CRP - doesn't it just add to the confusion though alongside PMR and/ GCA!  Does your haematuria also improve on the higher doses of Pred?  If so, some kidney problems are actually treated with steroids so that might explain any such improvement. 

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I always take a sample when I have my blood tests so I can check that next week. Rheumy would obviously like to know whether or not there are kidney probs so that we can plan accordingly.

I've just had a quick browse "Methotrexate versus Botanicals" and was surprised to find that South American plant extracts are being used in the States to replace MTX & are being trialled V other more traditional licenced drugs. I haven't had time to go into it in depth but I wonder if this is what my rheumy was talking about if we run into problems again re kidneys & MTX?

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I've seen stuff about them being used in cancer but I did wonder if he'd "mispoken" and really meant biologics? Maybe not. How very intriguing.

The bit about "MTX not disproven...", in the most recent documentation I've seen they do actually say it has no role in PMR and my rheumy here in Italy said a few years ago that here it is felt it has absolutely no role to play in GCA since there wasn't enough evidence to show it significantly reduced the dose longterm and there was some thought that while it might reduce the dose at face value, in fact the lowered dose might let the GCA start up again.That is certainly what 2 people I know met with - they got to a lower dose OK but then had a major flare, one had GCA, the other PMR.

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I might have misheard!

Thanks for your info re MTX - You've maybe picked up that I'm very wary about adding in MTX again in a couple of months time. I feel I'd like to try reducing the Pred on its own just very very slowly (he agrees with the v v slowly bit & knows about the extremely slow reduction at lower doses you advise) & we'll do that when we get there!

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Yes, if Methotrexate is proved not to be a drug of choice for treating PMR, then any trials comparing it to botanicals would probably be worthless as far as PMR is concerned.

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The lady who had the PMR flare has used the dead slow and nearly stop approach - and is at a very low dose without any MTX. I am positive that when it works for someone it is because it wasn't PMR in the first place but an inflammatory arthritis that presented with PMR. Which happens in about a fifth of patients.

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During earlier appts with rheumy he talked about me being on MTX for the rest of my life due to the recurrent/intensifying/unpredictable nature of my GCA. It's either steroids or MTX for life! I plumped for MTX as the Pred doesn't "agree" with me - I have everything on the leaflet except psychological problems.

However I'm not sure how he can Know that I'm going to need the MTX - or something similar "for ever". This disappoints me especially as both you & Mrs O quote the latest research as stating that MTX has no part to play in the treatment of GCA. I'll have to prepare for another conversation with him.

PMA has never been mentioned as a diagnosis - only that I have symptoms of Fibromyalgia. I do have bits of osteoarthritis - rt hip, Lt knee (ready for replacement), lower spine - all kept in line with exercise and Capsaicin cream over the years.

All these other possible conditions have paled into insignificance because of the severity of the GCA symptoms and the length of time it's been going on.

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In this link - which I'm sure I've quoted to you before

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

the second to last link takes you to a paper where one of the better PMR/GCA rheumatologists (Kirwan, now retired I believe) says clearly that there is no real backing to the use of so-called "steroid-sparers" in GCA. While MTX may help patients who have been diagnosed with PMR - as much as anything I believe because they didn't have PMR but LORA anyway (MTX is the first line approach for RA) - the 3 small studies I know off were rather mixed. One said yes, one said no, one didn't know. To my knowledge, the much longerterm appraisal showed that although it did help reduce the dose in the earlier stages, the number of relapses, flares and so on were not significantly improved with use of MTX but exposed the patients to the side effects of yet another drug. If general experience were that it works well I'm sure they would be doing a proper trial rather than with the far more expensive ones they are looking at.

You say you have symptoms of fibro - which? There are overlaps and when I was trying to decide what I might have, in the absence of any help from GPs, it was very much a toss-up. So they could be PMR symptoms of GCA. On the other hand - there are other vasculitides.

What imaging has been done? Before I would choose to be put on MTX for life when I do not believe there is enough strong evidence to say it makes a difference I think I would like a second opinion and a lot of imaging. I would also prefer to try reducing the dose VERY slowly from the beginning. You wouldn't be the first person to find reducing at 5mg even at 40mg is simply too much and induces either flares or withdrawal symptoms that LOOK like flares. A couple of people were being threatened with "other stuff" because they couldn't reduce the way the rheumy wanted. By reducing in 2.5mg steps they reduced steadily to around 25 and then in smaller steps even further. Some people apparently simply can't tolerate big changes at any stage. I would also want to try other forms of corticosteroid. Prednisolone worked for me with not too many side effects, prednisone in the form of Lodotra works even better with no side effects I can see/feel. Methyl prednisolone didn't work for PMR even at 20mg and the side effects were horrendous (massive weight gain, muscle wasting, a dark beard...). In a week things improved by switching to 15mg of Lodotra and I reduced steadily with occasional mini-flares so I don't think it suddenly coincided with the PMR dying down.

I'm not saying that you don't need something more - but I really don't see how considering lifetime MTX for GCA is the answer. And I REALLY would want another viewpoint. I'm biased I know but there are 2 people in the UK I'd consider asking what they think.

 

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More homework required from me for my next appt. What you say is what I feel is right for me.

I now know that this latest flare was due to coming down too much too quickly. It seems to be the published norm to move downwards in 10mgs from 60-40 then in 5mg drops to 25. 

Rheumy & I talked about 5mg drops from 60, each stage lasting as long as it took me to feel "well". I must say I find deciding whether I'm well or not very difficult.

I assume that the occasional episodes of sharp head painsheadaches & pressure/blurry eyes/jaw problems/deep ear pain etc that I now have after 2 weeks on 60mg again are signs of improvement from the debilitating, almost constant/can't touch my hair or lie down on a pillow at night sudden onslaught of 2 weeks ago.

Do my current symptoms have to completely go before I start reducing from 60mgs - or will the stages at 55/50/45 etc continue to deal with the inflammation?

Thank you for the information on Lodotra - I had no idea there was an alternative to Prednisolone. I have almost every side effect on th leaflet & find commonplace day-to-day routines very difficult .As a result I've given up most of my activities & find the 2 I've tried to keep going difficult due to extreme fatigue. (playing piano for a Sen Cit Group & organising a Club for elderly. I have a team of helpers for that).

I too have a black beard & with my humpback & bison SHOULDERS, turkey gizzard, moon face, droopy eyelids & occasional little eye haemmorages I look like Quasimodo!! HOWEVER I am starting to feel better despite still having echoes of the flareup and surprisingly feel positive that it's possible for me to manage the reducing more successfully this time.

You've intrigued me - are you able to give me contact details for the 2

people mention for a 2nd opinion?

I appreciate the time you've taken to support me since I first posted You've given me several lifelines in the last couple of weeks. Thank you.

Jean