PMR/possible psoriatic arthritis overlap. X 2 flares on Pred when down to 9mg.
I read all the wonderful stories of folk right down to low doses of Pred but I seem totally stuck after a year of Pred.
I have found out the hard way that my body cannot work at the pace it used to and I still rile against that as I have to do stuff just as I always have for me and mine.
I have been self injecting MTX for a month now at the bequest of the Rheum..what can I say. Early days according to the bumph for reducing pain, and on that area it certainly has not..meanwhile massive hair loss, fatigue, lumps on hand(strange little sodpots- not painful), ridiculous eye twitching..but the nausea which originally was all day has subsided. Mood even lower than it was but we lost a very good friend and neighbour to a vile cancer this weekend so not surprising. She was a great lady and I miss her.
I see the rheum next week, I don’t know whether to write all down and just give it to him to read, but know when I am there I seem unable to tell all.
To me and from reading all the good advice, it feels like I still have a lot of inflammation. Shoulders always painful, neck stiffness kicks in, hips last. But the add on is painful spine and around upper ribs so much so that it hurts to take a deep breath, I can actually press on a rib ? Joint and it is so tender, much like the shoulders. So is it the PMR or is it arthritic ..seems strange to be arthritic as no redness or swelling. I just wonder if I should ask to stop the MTX, or if I should try and keep going for 3months, or whether I need more Pred which is frankly saddening when I had hoped I might be able to taper down slowly. I’ve been stuck on 12mg for 3 weeks now reduced by .5mg. The Rheum expects me to be on 10! Apologies for yet another long winded tome😔
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August7
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Yes I’ll have them prior to seeing him. I have to go to the hospital as the surgery have not enough staff to do them which means I can’t see any results on the NHS app unfortunately. But thank you I’ll stick to the 12mg
I read all the wonderful stories of folk right down to low doses of Pred but I seem totally stuck after a year of Pred.
Yes but as we say, that’s their PMR, yours is yours.. end of. Frustrating as it may be there is point in comparing.. plus have possible psoriatic arthritis as well to de in the mix.
A month on MTX is really not long enough to know if it’s doing any good, most say at least 3 months before a significant improvement. Trouble is, the side effects seem to kick in straight away.
Sorry to hear about your friend, that will be adding extra stress, so no wonder you feel rubbish.. and probably flaring to boot.
Spine and ribs pain could be Costochondritis, many seem to suffer from it in here… think SnazzyD has some good info on that.
What Rheumy wants isn’t always achievable.. at the best of times, let alone all you have going on… suggest you make some notes for them to read rather than try and tell them and not cover all the issues.
As far as other people getting to a lower dose, a lot of us feel envy when we read those, and you will notice that there are also a significant number who have not managed to reduce much. Your rheumy will be used to that. It is a good idea to write it down if it will take the heat off for you. I used to have a rheumy who was good enough, but always made me feel about 2 inches tall and it would take ages afterwards to get over the cringe factor. In the end I asked to change to another, and it is much better now. It's hard when there are only two of you in the room, and the other one has all the power if s/he is inclined to disregard what you say. But in the end, it is your disease, not hers, and if you have to reduce faster then you need, then it is you who will have to put up with the pain. So good luck: if she doesn't understand, then it her who is the idiot.🙂
So you had the same experience. It is mad isn’t it that you feel reduced to that. I think there is another Rheum but I will see how it goes. But thank you for your reply😊
To be at 9mg after only a year is perfectly reasonable -those who are at low doses will almost certainly been on pred a LOT longer than that. Half of patients get to 5mg in 18 months - that means that half take longer. 9mg at a year is on track for 5mg at 18 months. And you have been through a lot which will have influenced the PMR.
I refused to have my QOL messed up by MTX and my rheumy backed me,
That is the nub of it isn’t it…I thought I would wear my big girl pants and try MTX as felt if I did not it wouldn’t be well received. But ridiculously the hair loss has tipped me, I’m lucky I used to have a lot!
That was the first - chunks falling out after the first dose. Then the hunger - never had it with pred alone - and I gained weight, And the fatigue - couldn't put one foot in front of the other. No, no way ...
This sounds all too close to home. I’m not sure the Rheum will be that sympathetic to hair loss, my hairdresser was quite shocked as she didn’t realise I was taking MTX. And yes increased hunger…for sugary high carb food…noooo, and the slam dunk of fatigue..
Yup - but QOL is paramount and hair loss can be the final straw for many. MTX isn't guaranteed to do anything in PMR and I am adamant it is worth trying if you don't have adverse effects but there is a line to draw. How much folic acid are you taking? Many rheumies don't given enough.
It’s difficult to say when so many different things become mixed up. I wonder what you are doing on your better days and what you push yourself through on not so good days. What do you do with your upper body, particularly repetitive motion, even if it doesn’t seem strenuous. I ask because even without PMR, just GCA, I had issues with upper body weakness and wonkiness, especially from poor posture. Even after Pred repetitive motion was so bad for my upper body. This came out as rib pain, neck pain, shoulders and back. To add to that my hip and lower back muscles were also weak which have me problems there too. I can’t say if that is your problem but I think it might be an idea to see someone who deals with nuts and bolts rather than just inflammation to have a check over. I have used good physios and osteopaths.
Of late, 4.5 years after stopping Pred, I have had costochondritis associated with my upper two ribs that have affected my lower neck and chest. It was very painful to touch. It is now fixed and I now know what small exercises to do. We become so focused on our condition/s that we forget what a pickle our bodies can get into. Rheumys and GP’s are no good at that stuff or don’t have time. Apart from wanting to feel better, I also try to find out what’s what before assuming it is medication that’s needed. I am not saying that none of this is inflammatory at all, but one can collect all sorts of problems along the way that Pred won’t help. You can also work out what is likely PMR or arthritis etc.
I’ve never seen an Osteopath but a good idea from what you describe. I’m not sure of any repetitive movements but seem to have a few rough days and then a good one. The Costochondritis certainly sounds similar so will look into that. Thanks for the very helpful reply.
Hi August7, greatly sympathise as I'm on my 3rd time going down from 10mg. Have little to add from the advice you've already had but a small question on the "sodpot"s you mention. I assume this is a typo but is it to do with reddish-purple spots just beneath the skin - which I assumed are due to burst small blood vessels under the skin. This I have recently noticed several times usually on my lower arms and thought just one more sign age, I'm 73. They reduce in colour and fade about after a few weeks. I have one now on my wrist just near where I wear my watch. Never had them before but maybe another aspect of PMR/Pred ? good luck I think we all need that from time to time 😊
Petechiae if they are small, purpurae if they are bigger. Pred makes the capillaries in the skin leaky and more delicate if you scrape your skin - even a shopping bag over my arm would bring them out for me. They have almost gone since my pred is down to 7mg but a firm scrape will cause one. They are a sign of aging - and pred accelerates some skin aging effects.
I think it depends on how hard you scraped the skin!!! And they are effectively bruises so can be bigger. One source suggests that purpurae are joined up petechiae so I would assume that purpurae can also join up!!
This site, I think one of the best for dermy things, always has good pictures
There is a wide range of biologics approved for inflammatory arthritis but they are often kept as at least 2nd line after MTX, LEF and so on. Now they are a lot cheaper, they are probably used a bit sooner in some forms of arthritis but usually they work through a list. But PMR isn't an inflammatory arthritis and nothing is approved for it in the UK.
Most of them end with “..mab” and it depends what type of arthritis you have.
This from AI
Specific Conditions and Biologics:
Severe Asthma:
Biologics like omalizumab, mepolizumab, reslizumab, benralizumab, dupilumab, and tezepelumab are used for severe asthma, particularly allergic and eosinophilic asthma.
Crohn's Disease and Ulcerative Colitis:
Biologics such as infliximab, adalimumab, golimumab, vedolizumab, and ustekinumab are used to treat moderate to severe Crohn's disease and ulcerative colitis.
Rheumatoid Arthritis:
Biologics like tocilizumab and sarilumab are used to ease symptoms and reduce joint damage in rheumatoid arthritis.
Psoriasis:
Biologics such as adalimumab, etanercept, ustekinumab, secukinumab, ixekizumab, brodalumab, guselkumab, risankizumab, tildrakizumab, and bimekizumab are used to treat severe psoriasis.
Other Conditions:
Biologics are also used for conditions like atopic dermatitis (eczema) and axial spondyloarthritis.
Ah thanks for that. Yes mine too lower arms..but like a blood blister. 🤔 On my hand small white raised lumps near base of thumb ..prob totally unrelated 😀
Thanks Secongen, I think I'm OK, I've been taking a daily 10 microgams of D3 for 2 years. When I first suspected something was wrong and maybe Vitamin D deficiency was a cause, turned out to be PMR !
I struggled on 12 and had to go up to 13. The rheumatologist put me on lefluonemide instead of methotrexate. So far no side effects after a 6 week period and down to 12pred over a week with no return of pmr symptoms.
If it makes you feel better, I am still on 14.5 mg after over 2 years. I am to the point where "it is, what it is" and thankfully my docs have conceded this, too and have stopped bothering me to reduce on any "schedule". When yesterday at a routine appt the GP I mentioned I am going to try to reduce again this Friday , he said "so you are going down 1 mg per week?" I laughed out loud and said "I can barely do 1 mg per month. I am just one of those people who need more. " He then just nodded and said, "yes, everyone is different".
I also get pain when I press on any areas affected (including ribs, but lower ones for me), and it pretty much all goes away when on higher doses. The conundrum of my life!
They offered me that newer drug Kevzara (only available here in the US), BUT I have diverticulitis (one big attack 3 years ago), and you really shouldn't take Kevzara with that, can lead to perforations..no thanks, I'll stick with the Pred.
I guess my point of all this is please don't be worried about what they say. Write down your thoughts and points and facts and don't let them bully you around about reducing to 10 mg right now. It's not their pain, they would be doing anything to rid themselves of it!
Thankyou!!!😊 It’s so reassuring to hear this. I am so grateful for all the shared experiences and advice given on here. Sounds like you have it sussed and your Dr agrees …respect!!
Hi, is it possible for you to be accompanied by a friend or relative during your consultation. My husband comes in with me now and my Rheumy has stopped bullying me. I also find it helpful having another pair of ears to listen to his responses. Good luck. 🌸
It’s often difficult to distinguish pain from multiple conditions but suspect you’ve already overshot your steroid dose and would not drop any further as it can take time for the methotextrate to work. We cannot entirely cacoon ourselves from life yet alone meet the fundamentally flawed expectations of the rheumatologists so ease up on yourself - your doing fine.
I’ve ended up increasing then decreasing more slowly only to end up on same dose this past year. My chest/ribs, neck, shoulders, hips are all hurting again and am too stiff but will not feel bad about increasing again because this is what my body currently needs and nothing else works. There are external factors going on and PMR will do its own thing !
As my cognitive function is badly affected, I do write things down. In my experience they don’t like being given papers however and there’s usually a facial expression when I pull out a list but tough - we have to wait years/months for just a few minutes consultation time so focus is needed. Take someone with you if it helps - good luck
It is not adequate to manage the inflammation in PMR or GCA, No supplements of that sort should be used without checking with your doctor or the pharmacist since it interacts with medications that members of this forum often require.
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Could you please advice me how long Pred takes to work?
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