GCA and PMR now RA

[cmToddy]

Hi all and hope you get to feel soon. I was diagnosed with PMR just over 4 years and although some set backs I eventually got to 5Mg Pred. I was doing quite well but developed TMJ on to GCA. I was back up to 60mg but slowly got to 5 Mg again. Started feeling let’s say not quite as well but very little pain. Last October when on 4mg I started having trouble with hands. Despite that as I didn’t think it was PMR I continued to 2.5Mg a day. Very little pain otherwise.

My regular appointment with my rheumatologist came up on 1st of this month, March.

I told him that I was doing well and pleased that in maybe 3/4 months I might be finished with the lot of it, and that I couldn’t wait. When I mentioned my hands, which by now were incredibly sore and painful, he sent me for tests and arranged a couple more.

Although he can’t confirm without the test results, he said he is sure it’s Rhumatoid Arthritis. He now wants me off the Pred by the end of April so I can get clear results from Ultrasound and other tests.Although so massively disappointed if I have it , ok that’s how it is. My problem is I am reducing the Pred by 0 .5 mg every 2 weeks, I feel dreadful. Absolutely awful. Tired, weepy all that comes with drug withdrawal. I can’t start treatment for RA until off the steroids. Any comments, experiences or advice very appreciated. X

[PMRpro Ambassador]

Hmm - well I'd have a few questions: like what about adrenal function? If it isn't already waking up, being off pred by the end of April might be a bit skating on thin ice. And you are showing the signs of that already.

If you were to have a stressful event - illness, accident, emotional - you could become very ill. If you show ANY signs of an adrenal crisis, above all confusion, dizziness, faintness, nausea, vomiting, diarrhoea, excessive sweating call 999 and say potential adrenal crisis. You urgently need corticosteroid to avoid collapse. You can become very ill, it can even be life-threatening without immediate medical help.

medlineplus.gov/ency/articl...

And exactly WHY can't you start treatment for RA while on pred? Pred is used to calm down flares in RA patients on DMARDs and plenty of patients with PMR are put on methotrexate in the hope of reducing their pred dose - MTX is the first line treatment for RA and has been for over 30 years.

[cmToddy in reply to PMRpro]

Pro thank you so much for responding. I do think I need to take the taper much slower than this. I will call the Rheumatology help line re position. I got the impression the steroids make a difference to the test results. I can manage waiting for the MTX but not this feeling poorly which is low adrenaline. Best wishes

[piglette in reply to cmToddy]

Steroids can make a difference to test results, but that is no reason not to treat you for a second illness. Are they saying we can only have one illness at a time?

[DorsetLady PMRGCAuk volunteer in reply to piglette]

If only! Would make life a lot simpler for everyone….

[Sharitone in reply to DorsetLady]

Particularly if we could choose.

[piglette in reply to DorsetLady]

Some doctors would still get the diagnosis wrong!!

[PMRpro Ambassador in reply to cmToddy]

Of course they make a difference to test results - they reduce the inflammation and so, of course, the inflammatory markers. But they won't alter things like the ACCP blood test or erosion in the hand joints which I assume is what they are intending to look for with the ultrasound.

As the others say - many of us have more than one illness and need to be treated for more than one at a time. I would want a lot more justification for waiting while making you unwell because of reducing the pred - and that in itself is potentially quite risky if you have no reserve adrenal function.

[DorsetLady PMRGCAuk volunteer]

Would say your adrenals are struggling at the moment - and no wonder tapering as you have been instructed.. why don't some doctors realise that!

Personally don't think you should reduce any more until they have had time to 'catch up' - have a read of this- and maybe ask Rheumy -"what happens if I have an adrenal crisis on your tapering plan"

healthunlocked.com/pmrgcauk...

PMRpro has addressed RA issues as well as adrenals.

[cmToddy in reply to DorsetLady]

Thank you so much DL. I know it’s adrenaline. I recognise the feeling.i will call hospital tomorrow . Best wishes

[piglette]

I sometimes wonder if some doctors missed out a chunk of their training at med school. As PMRPro says why can’t you start treatment for RA while on pred??

[cmToddy in reply to piglette]

Thank you for your response. I will ask that question tomorrow. Best wishes c

[piglette in reply to cmToddy]

Let us know what they say!

[PMRpro Ambassador in reply to cmToddy]

Definitely report back!!

[Bcol]

Nothing I can add to the comments already made, but just to wish you success with today's telephone call to Rheumy. Hopefully you will get a sensible reply.

[cmToddy in reply to Bcol]

Thank you Bcol

[Reeceregan]

I developed RA after PMR and GCA, or I should say just as I was getting to the tail end of them. I was still reducing pred after being on it for 2.5 years at that stage. As I reduced the pred, a few wobbly aches stuck around but nothing unbearable but my hands and wrists and elbows became very painful. My rheumatologist scheduled a Doppler scan of the wrists and hands and it lit up like a Xmas tree, with existing bone erosion present. My blood test returned negative RA factor and my inflammation levels were within the normal range. This still enabled a diagnosis of seronegative RA based on the Doppler scan results. The main thing I want to confirm is that I was put on methotrexate WHILE STILL TAKING pred. I still continued with my reduction using the DSNS method and it took approx 6 more months before I was off it. By that stage the MTX had kicked in and I stayed on that alone for about another 12 months and then introduced Plaquenil as well. Bear in mind it can take up to 3 months for MTX to fully work so going off pred before starting MTX puts you in a position of pain and no relief. You don’t need a positive RA blood test to have RA. I have bloods every month and haven’t had a positive result yet ( 3 years RA).

[cmToddy in reply to Reeceregan]

Recereggan. Thank you for your interesting response. Could I ask you how you are with the RA now? 👍

[Reeceregan in reply to cmToddy]

Of course! And I’m incredibly well. I know I’m one of the lucky few. I’m nearly 69 now, dx PMR/ GC mid 2017 and let me tell you they floored me, literally, for a long time, I didn’t think I’d get over it. . RA dx 2020. Pred caused some major issues, cataracts, glaucoma, osteoporosis requiring bi annual Prolia, to name a few, but no more PMR/GCA, I’m off the pred, off the MTX and only on 200mg Plaquenil now for the RA. I do have a few other minor things going on that require regular monitoring but they have nothing to do with RA, I walk everyday, dance every other day, do as much strengthening or cardio exercise as I feel necessary, mind grandchildren, am the financial guru for my daughters large salon, ( work from home though and only when I want to🤭), go on motorbike rallies and hols in our RV and as long as I rest when I need to I’m as active as can be. I have my days where I take the added pain relief as a top up but that’s not often. I have regular rheumatologist, cardiologist, and ophthalmologist appointment as well so I’m in the best hands to keep on top of things. I hope you get onto the RA medication asap because it can do a lot of damage before you get symptoms and it needs controlling. I wish you the best of luck for the future.

[krillemy]

Hi there - I would wait for the results of the tests. I have pain in my hands and wrists. I am swollen between the knuckles and around the wrists. The pain and swelling get worse after too much use. However it is not RA. No damage to the bones. Just edema under the skin I am told. Doctors do not know what it is. Neither MTX nor pred. seems to have a good effect. Best of luck

[cmToddy in reply to krillemy]

Krillemy.Thank you for the response. It’s interesting. I would be so pleased to be told it’s not RA. I think I am just going to reduce the Pred in my own time as I am very aware of the consequences. Best wishes 👍

[k-mac]

Hi I was taking around 7mgs of Pred having PMR and GCA , developed hand pain which the Rheumatologist described as Sero Negative RA … didn’t show up in blood test. He then prescribed Methotrexate along with the Pred . It didn’t help at all. Dr Rod Hughes looked at my hands ( private consultation as desperate ) He took the view that it wasn’t RA at all but an osteo arthritis brought on by falling oestrogen levels . V painful . I’m around 4mgs Pred and in a fair amount of pain generally but now not sure which condition is causing it ! Hope you get more help 🙏🌈

[cmToddy in reply to k-mac]

K-Mac: not sure if my last two reply’s were sent but want to thank you for replying. It’s all awful and I hope one day, there is no pain at all. C

[k-mac]

Resist any rheumatologist trying to dictate to swift a reduction in Pred. and follow the tapering plans here. In 2018 , after 4 years reducing down to 3.5mgs , the rheumatologist 'informed' me I no longer had PMR and could safely stop Pred. either immediately or at most over 2 weeks. The resulting flare was worse than when PMR started in 2014 and I'm only just getting near to 3.5, 6 years later. I hope they can help with identifying if you also have R.A. Dr Rod was clear my finger pain wasn't RA as I'd been told, but hormone related due to the lower finger joints being inflamed and lumpy. I mean to explore oestrogen identical food sources ! Good luck xk

[PMRpro Ambassador in reply to k-mac]

Was that rheumy trying to kill you off? Adrenal crisis loomed there!

[k-mac in reply to PMRpro]

Took 4 very painful distressing months to get a gp to override this decision … they preferred codeine and sleeping tablets 🙈 Pred re prescribed by a rather grumpy locum and 7 hours later I could get up the stairs not on all 4s 🙏🌈💃🏼

[PMRpro Ambassador in reply to k-mac]

That is the state I was in with PMR pre-pred after 5 years of complaints to the GP. But to stop pred suddenly like that is tantamount to medical negligence. The fear of such a low dose of pred that worked compared to long term codeine and sleeping tablets that probably didn't comes close behind in the stakes.

[jackswife]

After taking Prednisone for 7 years, down to 1.5 mg, I was diagnosed with RA by a new rheumatologist. We had moved closer to our kids, and I attributed my many new symptoms and complaints in the following months to the enormous stress and difficulty from that. My new primary care referred me to a new rheumy but of course I had to wait a long time for an appointment. Two weeks before the appt, I got Covid and my PCP put me on Pavlovix, thankfully. After recovering I awoke one night with awful pain in my neck, shoulders and arm. The rheumy said she thought it was RA and that the prednisone had been covering it up. She sent me for bloodwork, which confirmed the diagnosis. I started methotrexate but it takes up to 12 weeks to work, so she let me go up to 10mg of Prednisone to address the considerably pain until the MTX kicked in. I am now down to 2mg of prednisone and am working my way down. I am hoping I will be pain free once off of it completely. It has been quite the journey. I don't know if any of this helps you but sometimes it helps to now others have similar experiences. No matter what, I agree with everyone that off prednisone too quickly will backfire! Trust yourself and your body. If your rheumy won't prescribe prednisone for you at low doses, maybe your primary care physician will. Mine did. I am luckier than many, I know. Good luck.

[Zappata]

Let's hope it's not RA. It might not be. I was waiting 4 years for steroids injections in my wrists but when I finally got there they scanned them and told me it was not RA but osteoarthritis so wouldnt let me have the injections. I was devastated but actually it is a better diagnosis even though the pain can be excruciating. I am now much more careful about keep my hands warm and dry etc as I have definitely abused them over the years

[PMRpro Ambassador in reply to Zappata]

Why is RA so bad? There is a variety of medications which work extremely well these days. Which is sometomes more than can be said for PMR ...

[cmToddy in reply to PMRpro]

Hi PMR Pro- I relate it to Zimmers and Wheelchairs and people with pain 24/7. C

[PMRpro Ambassador in reply to cmToddy]

Not in this century it isn't. The DMARDs have reduced the threat of grossly deformed joints for the last over 30 years since methotrexate came on line. In the meantime there are a load of biologics that add to the spectrum of medications and slow the progress of the disease, The sooner it is diagnosed and treatment started the better so any GP should be referring a query RA diagnsis as an emergency. Badly managed RA may mean what you think but these days there is a lot between the patient and a wheelchair.

[cmToddy in reply to PMRpro]

Thanks again that helps a lot. I was very concerned it but less so now. All the best C

[cmToddy]

Thank you so much for the response. I am not sure where I am heading at the moment so very appreciative of the support. C