Latest visit to the Rhemy

[Mamamia21]

I'm on 8mg steroids, 15mg methotrexate (to get me off the steroids) and Alendronic Acid for OP.

My neck and wrists have been in getting worse as I reduce. I wake up with wrists throbbing and am finding it hard to dress myself again. I thought by reducing to 8mg the specialist would be happy but also recognise the pain I am in... Well no...

I had added problems yesterday. All the computers were down and she only had my written notes so needed me to explain all over again what was going on. Again she repeated that she agreed with the first specialist (her mentor) that I could not have PMR due to age... I am sick of hearing this! She now thinks that I have got menopausal symptoms... and wants me to consider HRT. (Let's add more drugs into the mix, why not?) I have not had a period since I was 48 and I am now 54. Or we might even try pain management. I asked why I should keep taking methotrexate if it was not working but she said it was helping me get off the steroids. Well, clearly not if I am already in pain at 8mg...

The pains have changed over the years so maybe now I don't have PMR. I have no shoulder or hip pain which is where it all started. Maybe I now have something else that the steroids are masking?

She has organised a scan on my wrists and hands as the x-ray didn't show anything, and I am to stay on the medication I am on. Which is not helping... or maybe it is and I would be worse without any of it.

I am beginning to feel that I really am making all of this up... I should just slowly come off the steroids as this is what she wants and then start all over again. At least then I would not have them (all 3 specialists I have seen) telling me that long term steroids are not good for me. I am currently in pain anyway so if I keep reducing at least she will be able to see what she is dealing with...

[PMRpro Ambassador]

Long term steroids probably AREN'T good for us - but I am still upright after nearly 13 years. No osteoporosis (no bisphosphonates either), no diabetes (last Hba1c was 36), cholesterol is a bit high but my HDL level is very high. And having had 5 years of PMR with no pred - I can tell your doctor that she wouldn't have had to worry about it being long term had I NOT been given pred 13 years ago. I'd have topped myself - I have just had 3 months of constant pain that no pain relief besides pred has even dented. It has been horrendous at times. Luckily I live alone now - there is no way i could have continued to care for my husband.

She is talking utter rubbish - over 50 is the guideline age, and it doesn't mean you don't get it younger, just means it is less common. One of the top PMR rheumies in the UK told us at a NICE meeting a couple of weeks ago that she has several patients in their 40s.

I do realise you are struggling and haven't much choice as you live on Guernsey. But your only option seems to be a sensible second opinion from someone not wearing blinkers.

[Mamamia21 in reply to PMRpro]

I seem to be in a vicious circle... Is my only option to get to zero so the specialist can do the tests they want to without everything being hidden by the steroids? They seem to completely ignore the fact that I am in pain and should be happy to wait until I get an appointment for my scan and then again to see her again. This could all take months whilst I have to live with the pain in my wrists and neck. If I ask to see someone else I just think I will be here again very quickly.

I really wish that when my Dr diagnosed PMR she had asked me to wait to see the specialist before I started on my steroids. I feel if a specialist had diagnosed a condition then at least they would be trying to treat it rather than still trying to diagnose nearly 6 years on.

[PMRpro Ambassador in reply to Mamamia21]

And potentially making things worse if it is PMR because forcing patients to reduce and creating a flare deliberately often makes it even harder to get things under control again.

I wish I understood why they put so much faith in MTX. If it really does get patients off pred (it doesn't, it may reduce the dose if you are lucky) why isn't the protocol to use it from the start as they do in RA? It is worth trying - it does work brillliantly for SOME patients, but it does NOT work for everyone. Prof Sarah Mackie says that but she also freely admits it doesn't work for everyone. She has funding for a study but it will be years until that reports. She also agrees with me that there are different versions of PMR and one of them lasts a long time, is often seen in younger patients and it is very difficult to get to a lower dose of pred without symptoms reappearing. But the inexperienced - or pigheaded - have this blinkered view of a minor condition that responds like magic to pred and is gone in 2 years - what Prof Mackie describes as the "Two year myth".

As I have said a couple of times today - had I continued with the pain I had for the first 5 years of PMR without pred for the whole of my PMR journey I wouldn't be here now. I'd have topped myself. This drivel about "pain management" is pointless with PMR, nothing they have to offer works for the basic PMR pain although the pain clinic here did offer techniques that helped a lot with the add-ons - until Covid. After 2 years of no Pain Clinic I have been back where I was pre-pain clinic input several years ago. Yesterday for the first time for 3 months I had almost no pain. Today is a replay! Long may it last.

[Mamamia21 in reply to PMRpro]

I think my plan is to wait it out until my scan and then get myself out of pain by upping my steroids again. I can always begin reducing before I see the specialist again but I can't stay in pain until I do... I should not have to be making these decisions but it seems to be the only way at the moment.

I am glad to hear you are out of pain today as you say long may it last!

[PMRpro Ambassador in reply to Mamamia21]

What dose works for you?

[Mamamia21 in reply to PMRpro]

Currently 10 I think but the last time I had to go to 12 and come back down. I seem to get pain when I hit between 9 and 8.

[PMRpro Ambassador in reply to Mamamia21]

Which is your body telling you that maybe 9 to 9.5mg is your lowest effective dose. It is not uncommon to need that much - you may not be getting as much as someone else since the bioavailability of pred varies between 50% and 90% (the amount you absorb of the oral dose) but that seems to be something a lot of doctors don't think about, they assume everyone absorbs the same amount and quote 70%. It isn't as simple as that. And, as we keep saying, PMR only lasts 2 years for maybe a third of patient - most of us have it for longer.