Hi. I have had PMR for 5 years and been on prednisolone for the same amount of time. I am now on 2 mg but unable to get below. I am 59 so got it fairly young (54) and its dragging its pesky feet!
I understand the risk of the steroids suppressing the immune system. Does having an auto immune disease increase the risk and how we may recover?
Does the dose and amount of time on pred feed into factors when trying to assess risk? I already have steroid induced cataracts which were going to be operated on at the end of march. Other events took precedence!
I would be so grateful for any insight. At the moment a friend is doing my shopping as she worries about me but I am wondering because I am on a low dose I'd be ok. But is there a cumlative effect depending on how long I have been taking the pred?
Thanks for reading my long but hopefully clear post!
Hope everyone is managing as best they can out there. x
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Jennykk
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As I understand it both autoimmune disease and steroid treatment and duration of treatment are all factors that put us in a vulnerable group. More how we would fare if we caught Covid 19, than being more likely to catch it, I have read. At the end of treatment it would still take the body a good year to normalise. I don’t think you should hurry off your last 2 mgs. I doubt that it would have much if any impact on your current vulnerable status. I am glad you have a good friend who cares about you and is helping you to self isolate effectively. I also have Cataracts and delayed treatment due to the Pandemic. I hope this helps a bit, you are certainly not alone.
I think everyone who is in circulation is probably at risk of getting covid19. Your history MAY mean IF you get it you may be at risk of a more severe journey, but to be honest no one really knows...The research and advice I have had, and read, suggest age, hypertension and BMI over 40 can be significant as can other underlying conditions like heart conditions etc.
As we always seem to end up saying, isolation or stringent social distancing, washing hands, not touching you face etc is the best protection there probably is. I am glad you have such a good friend to help you. I think they are finally starting to get support sorted. Stay safe 🌻
Your adrenal glands start waking up once you are below 7.5mg. They can take up to a year to become fully functional (remember you are advised to carry you Blue Steroid Warning Card for at least a year, once of pred).
It would of some benefit to you it you asked for a Synacthen Test to see how the glands are progressing and if they have woken up.
I would stay where you are until after the cataracts op and it is worth following this as it refers to Pred Forte 1% (prednisolone acetate, Allergan)
I imagine that at this dose the pred is playing a smaller role than the PMR itself. Having any autoimmune disorder means you have a deranged immune system - not necessarily that it doesn't work, just works a bit squint at times! If you are well on 2mg then your adrenal function is probably returning slowly - that is also more a factor than the pred you are on.
I live in Italy, we don't have shielding, everyone is supposed to stay at home but over 65s are instructed to stay home except for shopping. If you are frail there are voluntary services who will help but I go shopping about twice a week - when milk is required and do everything else at the same time. Now everyone is to wear a face covering - and there will be some more relaxation of the rules soon. On that basis, you could go shopping if you avoid other people - but I don't know what your shops are like.
If you feel too guilty about your friend there a the NHS volunteers - and they appear to be sort of a job!! Though maybe your friend would be upset at a perceived rejection?
I am fit and well at the moment, just frustrated along with so many.
As I am well on 2 mg I am presuming the PMR is less aggressive too?
Although I am struggling to get below so it's still active.
My CRP usually corresponds with how I am but would not be a priority to get done at the moment!
We are all meant to stay at home here except for exercise and shopping. Some shops better than others at the distancing thing. If we have an autoimmune condition we are isolating except for exercise unless we fall into a certain category when we need to shield. Im not in that category.
I was trying to alternate 1mg and 2 mg. haven’t tried again for 2 months now as after a week or so I started getting the familiar pain and more fatigue.
Hello. Ive been in a similar situation to you as I’ve been struggling to get lower than 2mg. I got diagnosed with PMR in Feb 2017. I’d tried previously but it didn’t work and as I was due to have a hip replacement I thought I should stay on 2 till I got that out of the way. Unfortunately due to Covid 19 my op was postponed so I decided to make an effort to get off the pred if i could. I’ve used the DSNS method and gone down to 1.5 mg, carefully halving the 1 mg. it was quite tough to start with as I was very tired and not sure whether aches and pains were arthritis, withdrawal symptoms or PMR. I’m now feeling ok on 1.5 and will stay on that for a few weeks before trying to get to 1mg. I didn’t get a letter from the NHS saying I was vulnerable ( I’m 66) and the anaesthetist who was doing the hip op said I’m not particularly immunosuppressed. I have hypothyroidism and coeliac disease. I’ve been doing the shopping about once a week and am very cautious about going out. I’m still unclear about whether or not I shocks be in a vulnerable group.
I'm also at that stage, about to try a drop to 1.5 from 2. Am always cautious each time and nervous about how it will go. Using the DSNS method as always. Fingers crossed. 🤞 X
Sounds good with your reduction. Yes I am unsure too about whether I should be shopping but as PMR pro said having PMR means our immune systems are a bit up the creek so our response if we got covid may be more difficult. Its being on a low dose and presuming the PMR is less aggressive that is giving me some hope!
Hi Jenny, I am another who found it impossible to get my preds down to zero. My PMR started in 2009 and over the years my dose went up and down like a yo-yo but I just couldn’t get off them completely. I tried everything, including cutting 1mg tablets in quarters so my reduction was small, but each time I reduced I felt so bad after about a week that I had to increase the dose and start all over again. I don’t know why this was happening (wish someone could explain) or why my body was reacting so badly to such a small decrease! About 2 years ago my rheumatologist tried me on Leflunomide and it has worked a miracle. I am off the steroids and have no PMR symptoms at all. I feel truly normal again which I never did in 10 years on preds. The only negative is I did get an NHS letter.
My doctor suggested Arava but when i read the side effects i said no. Plus I'd still be on the prednisone for awhile with it I imagine. I also read you have to take cholesterol lowering drugs to remove it from your system. Do you think it actually works for PMR? I'm on 9.5 prednisone.
It does work for some patients - but I suspect it is a sub-group. Can have horrible side effect - as you saw! One of the ladies in the Scottish charity has had a good result although she has had to reduce the dose a bit to avoid neuropathy
hi Jennykk . Please don't try to reduce your dose too quickly ! .Each or us are different in our reaction to tapering . I too am struggling ,diagnosed in 2016, I easily reduced down to 1mg /1.5mg every other day , my weight dropped down to normal levels everything rosey ! started getting some twinges ,low and behold went to bed one night and literally couldn't move the next morning , my journey had begun again , I am still a year on from my flare up trying to reduce dosage {now at 2/2.5 mg }. everyday is a challenge , and a struggle . but I am determined to succeed no matter how long it takes.keep a clear head and mind ,if I have learnt anything on this journey its, that by trying to control the stress of your circumstances ,you will feel so much better. Pmr loves stress its one of its life lines. As for Covid 19 ,I too worry , I find it difficult walking at the best of times, I don't drive my husband over seventy does have health conditions ,I have just been able to get a slot on line at Morrisons for the 11th may . yippee bur nothing from the stores we have been using . but hey we will get there , keep strong ,stay safe , don't rush to do these things , we as PMR sufferers fight the same battle in our own way . We as the human race ,all face Covid 19 together the same foe , but as PMR suffers we know we CAN DO IT . stay safe .
It must be such a struggle with cataracts and then the frustration of not getting the surgery. I was about 54 when I got PMR also. I also have ulcerative colitis, another autoimmune condition diagnosed just a couple of years prior. I am down to 7.5 mg and doing fairly well. I did come off prednisone in March 2019 only to relapse in late fall. I think the best thing is to keep these chronic conditions under control.
I was diagnosed by an ER doctor, medicine specialist and rheumatologist the second time around. UC doesn’t affect the shoulders. As I got the UC under control in late summer I then developed flu like feeling, no fever, and was unable to lift my arms because my shoulders were so sore. It went on for weeks. My CRP and ESR aren’t affected by the UC based on my past patterns because it is localized, according to my GI, and there was a sudden spike. My shoulders are fine now, I can lift light weights again.
I don’t know if Scandinavian descent is still considered a risk factor, but I do have that as well. Other than that, I can only attribute these conditions to severe stress.
Thanks. I went through a lot of testing when I first got sick. They ruled out arthritis. No swollen or warm joints and prednisone cleared up my illness quickly. Originally it was so profound how sudden and devastating it was in my shoulders and hips. I can’t believe I got through that.
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