I have posted before on my background, so will keep this short.
I have had a three year nightmare of unremitting, severe head and jaw pain, and severe fatigue/muscle weakness.
Have been trying to taper and am having a bear of a time.
Currently cannot seem to get below 24 mgs. And still have pain and fatigue.
Meeting with new endocrinologist said I am having a thyroiditis flare which should burn itself out in 6-8 weeks.
She also said I really need to move to biological as she said being at high doses of prednisone is just not working for me. It’s true - I have tough side effects and every taper I try does not go well. Can barely move for weeks.
She said I’m swollen, have muscle wasting, and it’s just not doing a good job managing my inflammation. She said I can’t just continue to go up to deal with flares.
She said I need to move ASAP to a steroid sparing agent and said I needed to see a rheumatologist for this process.
She said it’s a tough process of finding the right one for me so could be grueling.
Was wondering if anyone else moved to or added a soaring agent; how it went and what seems to work best?
Thank you.
Really feeling defeated and it’ll take a while to get an appointment with a specialist.
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kellykel
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Sorry you are having so many problems. Due to the time difference most of the people who could advise you on sparing agents are asleep! I am sure you will get responses in the morning.x
I am not surprised that you are feeling defeated. I have Graves’ disease/ ophthalmic goitre, that presented as Thyrotoxicosis in 1984 when I had given birth to my second child. I was eventually treated with radio- iodine to knock out the thyroid function. I am now on 125 microgrammes of levothyroxine for life. As far as I was concerned that was the end of the active disease. However, I suspect that I never regained my former sense of well being and am prone to depression and low energy.
PMR was diagnosed in March 2016, with all classic symptoms. Prednisalone worked spectacularly well, on a start dose of 20 mgs and I have been doing a slow taper since then. Now at 5 mgs I feel quite generally unwell, with low level headaches, almost constantly ( always prone to cotton wool head, for years). The fatigue is pretty bad and getting out of cars and descending stars causes problems. Stamina is poor. I have been diagnosed as having low Adrenaline production and advised to shift to Hydrocortisone to treat this by my Endocrinologist. However, my Rheumatologist favours slow taper from 5 mgs with the aid of Methotrexate. I am stuck because the Endo is concentrating on the Adrenal glands and the Rheumatologist is wanting to address late stage PMR and Prednisalone dependency. I also feel that the dots of my condition are not being joined up holistically. I suspect that this is happening to you too. The Graves’ disease and its long term effect on my Adrenals does not seem to be considered. I wouldn’t imagine a flare of thyroiditis to produce your symptoms. They do sound like GCA that has never been properly controlled. Has your consultant ever considered you for Actemra? It’s a controversial drug that has had some success with GCA I believe. Sorry to go on about myself but you may recognise some of it.
You've described how I feel. That low level headache too. Just generally not good and gettin nowhere fast or slow. Have you made any decision which way you will go with your treatment? It's not an easy one for you.
If it were me, I would push to get in with the Mayo Clinic in Minnesota. I thought it was difficult to get in with them, but I had a sick child and got him in a month or two
Your story seems familiar. I have had GCA PMR since February 2016. Spent 2 and a bit yrs getting to around 15 mgs. Also constant querying of diagnosis from local rheumatologist but no suggestion of what else it might be. Didn't have headache but had the exhaustion and jaw and tongue pain. Osteoporosis and fractures as a side effect of prednisolone (I'm in U.K.) led rheumatologist to prescribe steroid sparers last summer, months after GP asked me whether I'd been given methotrexate! These drugs have to be prescribed by consultant in UK. It has been a grueling journey. Tried methotrexate last summer after 4 weeks felt more and more weird and rheumatologist stopped it. Then tried leflunomide which I had to abandon after a week because of acute diarrhea and numb feet, not to mention hair loss. Referred to national specialist who decided I had had GCA but not any more, but prescribed azathioprine. This didn't have any obvious side effects and I was able to get down to around 10 mgs quite quickly. Then got a cold, back up to 14, got over that down to 10 ish, got a very bad flu virus that turned into bronchitis, back up to 15mg, fractured another vertebra coughing, now stuck at about 10 again, having gone down to 8.5 when fatigue and headache got steadily worse after a week or so.
So I'm not sure if these steroid sparers have helped at all, as I never had a cold or flu whilst on just prednisolone and now get anything that's going and I'm inclined to think I might have reduced by 4mgs in nearly a year anyway. I have not been offered Actemra, I suspect that this is because of the argument about diagnosis, the local hospital messed up the initial referral so I didn't have a biopsy or see a rheumatologist until I had been on 40mg for some weeks and was feeling better anyway.
I am continuing with azathioprine for the summer but come flu season I think I shall probably stop it.
I have an ENT appointment next week, after waiting 6 months, this is the NHS under the current government after all, which will hopefully investigate my one sided eye pain and deafness and jaw problems which rheumatologist says can't be GCA.
I am not sure which is worse, the disease, the continuing doubt about diagnosis or the endless waiting to see some other specialist!!
Don't know who your GCA expert is - but ears can be part of GCA and some people complain of eye pain. Did they do imaging to rule out ankylosing spondylitis?
There was a lady on another forum who had a grudging PMR diagnosis but the fairly characteristic but rare symptoms she had for GCA were disputed. Prof Dasgupta in Southend saw her and said he thought she had had GCA in the past but it was now too late for high dose pred and they should concentrate on symptom management (which I was of the impression was what happens in PMR/GCA anyway) but no-one would sanction a high enough dose to do that for more than short periods. In the end she travelled to Leeds to see Prof Mackie who picked up on a comment the patient made about night time back pain which was earlier in the night than PMR pain would be expected. Imaging showed ankylosing spondylitis, she was switched to an anti-TNF biological drug with excellent results.
Think I have to agree with you re the steroid sparer. I was on lefludomide, which I believe has led to peripheral neuropathy in both feet/legs. The main problem though for me was the constant infections that I caught in the winter - this meant that any steady reduction was neutralised when I had to go up on the steroid to control the infection.
I have a friend who is on leflunomide. It worked magically for her - until it caused neuropathy and tremor. She stopped and wham, back came the symptoms. She has restarted at half dose to see if that is enough. But I could not countenance the symptoms she developed. Pred at whatever dose is preferable to me.
PMRpro, you’re just a well of wonderful information. I am so grateful for the time you take to respond so quickly, thoughtfully and with great insights and good questions back.
As a side note, Mayo said I do have the symptoms of GCA, but all my inflammatory markers were normal, my temporal veins looked fine, and yes, I was 52 when the virus hit and then the unremitting head, jaw, and down arms to thumbs, pain was severe and constant. As well as deep fatigue, weird vision (grainy) and muscle weakness. They also said at 40 mgs of prednisone for 6 months, I should have had a lot more relief. The fact I wasn’t responding “normally” to prednisone for GCA also added to their “strong belief I don’t have GCA.
They gave me a connective tissue disease diagnosis, along with a few others, and said to try and get to the lowest pred dose possible and day my best with palliative care to deal with my new, disabling life.
I’m told when I taper, my inflammation is just tearing it’s head. At 10-7.5 mgs (only got their once) I have adrenal insufficiency and when I get there again, they’ll move me to hydrocortisone??? (Or something spelled like that).
Now, after trying to taper, I have this whole new bag of tough symptoms from hyperthyroidism or what they said was Silent Thyroidosis - I’m sure spelling is off there too.
Apparently, this new issue will burn itself out in a couple of months.
Anyway, thank you again.
I now begin the search for a new rheumatologist who I can afford. I can no longer afford Mayo unfortunately.
Whoever it was said all that - I don't agree. You may be someone with low bioavailability so you may not be getting the benefit of anything like 40mg and some people need a lot more to get it under control. Up to 20% of patients don't have raised markers, especially younger ones, 52 is fine for age and it is only found in about half of temporal arteries - it could be other places, just not there, I am flabbergasted that people at the Mayo are so blinkered.
Good luck in finding someone who treats their patient instead of their preconceptions.
If it’s the lady in Scotland, yes I did contact her. I thought too that although she had had wonderful results it was at a great cost.I don’t think in her shoes, I personally could have considered going back on it, even at a half dose. But then we all have to make our own personal decisions and I do hope it works out for her.
I was speaking to a Scottish lady at the London AGM. she was saying how wonderful leflunomide is and recommended it to me. Wonder if this the same person.?
Could possibly be. She did have some really dramatic results in reducing her Pred level but as a result of taking the level of Lefludomide that she did ( 20 mg) she suffered some nasty side effects. I was willing to give it a good go and took 20 mg daily ( maximum I believe ) for about 18 months. I don’t believe that it really made any difference to my tapering except that I was more prone to infections in the winter and I had to increase the steroid dose then, undoing a lot of the hard earned reduction earlier. I also developed peripheral neuropathy which I believe was from the Lefludomide( no firm evidence though) The Consultant who I see prefers Lefludomide to methotrexate and sometimes perhaps it’s just a suck it and see - everyone is so different.
Have you still not got a diagnosis of GCA? I gather from your profile you have already been to the Mayo and the claim is you are too young. Over 50 is the guidelines age for GCA - and that doesn't actually mean you can't have GCA younger, it means it is far less common at under 50. There are quite a few biopsy-proven cases in under 50s
Just to make it clear: your endocrinologist seems to have a rather inflated expectation of so-called steroid sparers if she is thinking GCA. Many rheumies use various DMARDs as used in arthritis claiming they reduce the steroid doses required - personally I am less than convinced they work for GCA/PMR itself but may work where there is possibly a mixed or incorrect diagnosis in PMR. GCA is a different matter, and "possibly not-GCA" is an even more different matter.
There is only one that can be said to be reliably expected to make a difference for anyone on this forum with GCA and that IS a biological: Actemra/tocilizumab and in the clinical trial it seemed to work for about half of patients with GCA to get them off pred. For most of the other half it gets them to a much lower dose but they still require some pred to manage symptoms. Some patients experience unpleasant side effects. It has been used for RA for at least 7 or 8 years so there is a fair amount of experience of using it in rheumatology.
If you are in the US it shouldn't be too difficult to get a trial of that. However, before they try any of them, surely they need to have some idea about what inflammatory process is involved. If the inflammatory process involves IL-6 then Actemra will probably help. If it isn't, it may well not. It is the same for any biologic - is the process they target involved in YOUR illness. I assume that is what the endo is talking about when she says it will be a gruelling process. But because of that I don't think the experiences of others using the so-called DMARD steroid sparers will help you and the only biologic anyone here can speak to is Actemra.
Follow that link and read up about E L Matteson Mayo Clinic.
No, I am not in the States, I live in the UK. Have never met him personally, just over the net when I was a Patient Rep on the new GCA Guidelines, which are yet to be published.
Maybe a rheumatologist might actually be able to help more with all that is going on for you whennyou actually get timers someone. I can only send good wishes to you. I hope you get sorted. Let us know how you get on.
Hi, I have GCA-PMR and had a very tough time tapering below 25 mg. Every time I tried to go below, I started getting severe headaches that I thought were GCA related and not due to prednisone tapering (but who knows!). I talked my doc into prescribing me Valtrex (anti viral) for 2-weeks on the basis that perhaps the disease was triggered by a virus (I had reasons to suspect that). Subsequent to using Valtrex, my prednisone tapering symptoms have been limited to a little achiness for 3-days, but no other GCA-PMR like symptoms. I am currently down to 16 mg and tapering 1 mg every 2 weeks. Maybe this is all a coincidence and the disease process is tuckering out. There is literature indicating the potential value of using an anti-viral for GCA, however the studies have been disputed and going that approach is non-conventional. My input may not be correlated with your current set of symptoms, so take it as just my story for prednisone sparing. Good luck.
Hi Kellykel, I was put on Plaquinal about 7 weeks ago now. I have PMR since May 2020 and I have osteoarthritis as well. I had gotten down to 6mg prednisolone, had a flare and my OA pains and aches became more obvious at the lower dose. I then went back up to my 'best place' which was 7.5mg Pred and am still there. Taking it very slowly. My PMR appears to be very good now. The Rhumatologist put me on Plaquinal. My inflammation is much the same so far. I improve every evening though. I'm told that the Plaquinal can take up to 12 weeks to kick in. I'm persevering but wish it would happen. Patience I guess. Not much help to you I'd imagine, just relating my own issues.Good luck with your own situation 💕
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