This is my first post. I have been reading all your posts and you seem to all know quite a lot!
I have been up and down on pred for about 5 years. My rheumatologist is happy to leave me on 5mg but said that I could try to reduce. I have tried before but went too fast after 3mg but this time went very slowly at half a mg every 2 months but at 4mg now have pain in my arms shoulders and for some reason the inside of the knees. I thought that I would get a blood teat and CRP is 7.6. My GP left a message to say this is satisfactory but I think it's high. What would anybody here call high please?. I think that I may have to up the tablets but worry about the effect on the adrenal glands with all this up and downing. Also now worried about the inflammation causing a narrowing of the arteries. Worried all round really. Sorry for the long text!
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Daisymay
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It really depends what your previous readings were - is it haigher than they were? But whatever the blood results say, the symptoms ALWAYS are more important.
One very good PMR rheumy likes to keep patients at 5mg for up to 9 months and that lets your body and adrenal glands catch up and often makes the rest easier. You are better doing that than getting into a yo-yo pattern going down and back up. AND you have a rheumy who isn;t pushing you to get lower if you can't. Go back to 5mg, leave it a few months and then try again in the spring - other rheumies discourage reducing in the winter with the cold and wet.
PS - could you add a bit to your profile please? Which country, bit of history ... Helps us a lot.
Thanks for the reply. Sounds a good idea to go back to 5mg. I am from Cornwall England and am 68 years old. I was diagnosed with PMR 5 years ago after 6 months of worsening pain that started in my arm. I couldn't move by the time I was diagnosed . I started on 15mg and reduced from there but got some scalp tenderness so they put me up to 30mg. After that I was up and down mostly to 10mg then reducing but always coming unstuck below 5mg. I always assumed that I would get to zero. Hmm. Im like everyone else, I don't want to be on pred. The consultant has suggested methotrexate which I don't want to take. I've looked at a blood test late 2019 and CRP was 4.1 but I was taking 7 or 8 mg at that time.
If you have got to 5mg on your own, it is silly to add mtx which isn't guaranteed to work but will add another layer of potential adverse effects. 5mg is a low dose with few side effects and Prof Dasgupta in Southend, a top rheumy in the field, told us a few months ago he often keeps patients at 2 or 3mg indefinitely as it reduces the risk of relapses. You aren't far off that,
Thanks for the profile - have you put it on your profile page too? Just copy it to the bit where you say "Hi, I'm ..." Then we can always find it to help answer your questions.
Have been trying to update my profile but when I look again it's hasn't stayed there. Obviously missing a save somewhere! Thanks for the replies. Helps a lot. I don't feel so alone with this .
To be honest until I came across this site I didn't know of anyone with PMR so had nothing to compare my experiences with. Its good to hear and see everyone's journey and experiences and is a good leveller. I tend to Google too much and probably scare myself needlessly. Thanks for the info about your CRP. That went very high didnt it!
I am on 3mg and my recent CRP was 8, ESR 8. Original numbers were CRP 30, ESR 70. I’m not sure whether my numbers have been affected by my urticaria, which is driving me bonkers at the moment.
Thank you all. Hope that the urticaria can be controlled Meggsy. To have other conditions as well as some of you have must be hard to cope with but you all seem to try to help and support each other which is great.
Urticaria can be caused by a food intolerance, for example I have histamine intolerance which is possibly related to inflammation but nobody knows what triggered it. Have you tried keeping a food and symptoms diary to see if there are connections? Possible culprits are cheese, pickled and fermented things or anything you eat or drink often.
Thank you tangocharlie. When I mentioned it on another page I was directed to your previous post re histamine intolerance and have removed those foods from my diet. Of course many were the healthy foods I thought would help fight PMR - kefir, kombucha, sauerkraut, miso, sourdough (all fermented foods), loads of spinach, walnuts, cashews, pulses etc. Fortunately there are still plenty healthy veges and fruit to choose from. I have decided to juice after watching two films (and some you tube interviews) by Joe Cross. He weighed 320 pounds (I think about 145kg), suffered severe urticaria and was taking large doses of prednisone and other drugs for various complaints. He juiced for 60 days while driving across America and interviewing people re their eating habits. He lost the weight, hypertension, diabetes and urticaria. I don’t need to lose weight, so I will just drink fresh juice each morning till lunchtime. I have a juicer so might as well put it to use. Thank you once again for your advice. Has your urticaria subsided? Marea🌻
I guess it's worth a try and saves cooking. I'm trying to re-introduce some foods, very slowly, like a tiny nibble very occasionally. I've managed to have a bit of avocado and today I had a segment of an orange but still can't have even a tiney bit of yoghurt. It all depends on how full your histamine bucket is, and I think that is partly linked to inflammation levels, as inflammation raises histamine. Come back and tell us how you get on. I come across people who say celery and kale juicing every day cured them of this that and the other but personally I'd rather die, I even hate the smell of celery, though I have learned to eat celeriac. I have cut out milk and pork now and will see if that makes a difference. Enjoy the experiment
Yes thank you I found that a few years ago when I as trying to figure out what I react to. My reactions correspond to most of the things listed on there as high histamine, including many e-numbers and fillers in meds. Who would have though such microscopic amounts could cause such great problems?
Heed the advice from PMR Pro regarding symptoms as opposed to CRP results. I haven't had a blood test since I started on pred but just went by how I felt; if I reduced the dose and felt ok, I would wait 4 weeks and then reduce again. If I felt the symptoms returning I went back up and waited until I felt ok again. And always use a taper plan to reduce your dose leaving a month between fnishing one taper and starting another.
I thought that I was tapering well I have been going 2 months for example on 8mg then 2 months alternating 8mg and 7.5 mgs then 2 months at 7.5 and downwards. Thought it would work but hey ho doesn't seem to. I am tryong leaving out foods that are inflammatory. So no processed food e.g. cakes biscuits sausages bacon etc and lots of fish and vegetables. No results as such and to be honest I crave something sweet but I have lost a stone although my BMI was ok I thought it might help alleviate the discomfort. I think that I have made the mistake of continuing to taper even when I didn't feel that good. Im learning thanks to you lot!
"I think that I have made the mistake of continuing to taper even when I didn't feel that good"
I think that may well be the case. PMR isn't a short term illness - it can take a long time to get to where you need a really low dose and it can't be rushed. I've just written this to someone else - it may help you too:
"It isn't advisable [to stay at high doses permanently] - the higher the dose and the longer you are on it, the more likely you are to develop long term adverse effects. I have no identifiable adverse effects after a considerable time overall at 15mg - but I need it for other problems as well as PMR. However - your story suggests your doctors don't really understand PMR. 15mg was OK, 12.5mg was OK - 10mg wasn't at the time. But 11mg might well have been, The difference between enough and not enough is that small. You are NOT taking a course of pred and then reducing to zero pred - you start at a dose that is more than you are likely to need and will induce remission of the symptoms. Then you undertake what is called a titration to find the ideal dose for you personally. It is a technique used with many drugs but usually the other way round: you start at a low dose and titrate UP, to find the lowest dose that works for you. That doesn't work in PMR, you are always playing catchup. In GCA the patient could go blind while waiting to find the dose they need.
The underlying autoimmune cause of PMR is mostly at its most active in the first couple of years and so you usually need a higher dose at the start than you will later on. If you reduce too quickly you almost always run into trouble because you overshoot the dose you need just now. Small steps and staying at each new dose long enough to know it is still enough almost always reduces the likelihood of such flares providing you keep an eye out and are honest about returning symptoms.
Not everyone absorbs the same amount of their oral dose of pred - it can be anything from 50 to 90% so you can't really compare 2 people. One may absorb 90% of their 10mg dose and be on the equivalent of 9mg, their neighbour may need more than 15mg oral dose to absorb the same amount. There are other factors - is the underlying disease very active, does the patient need to work, what do they weigh? There is no single "right dose".Had you gone 1mg at a time you might have done much better first time round - not least because it would probably have taken a few months longer to get to 10mg by which time it was enough or you would have found 11mg was OK.
rcpe.ac.uk/sites/default/fi... uses a taper that starts with 6 weeks at 15, then 6 weeks at 12.5 and then drops to 10mg where they stay for a year. The authors found it reduced the flare rate from 3 in 5 to 1 in 5 - and I think that is mainly because they waited so long at 10mg and the disease activity had faded."
The numbers vary - but most good doctors are relatively happy once the patient has got to 8mg which is a similar amount to what the body produces naturally as cortisol and then accept the dose better. But as time goes on you should get to a lower dose - but you have to be patient. Forcing it doesn't work well. You shouldn't feel worse at the end of a reduction than you did at the start of it.
Thanks for that. I think my impatience led me to try to reduce too quickly. I had previously never had to take anything so it went against the grain to take something for any length of time but I have to come to terms with the fact that this is long term. My doctor doesn't seem to know too much and the consultant seems slightly dismissive of my worries. Thank heavens for you lovely people.
Well that's good to know. I can see that what I think of as high to others would be low or acceptable. I'll keep trying to listen to my body and act accordingly which seems to be the path to take and I will hopefully feel better.
Because of severe osteoporosis I'm having to do PMR without steroids. And when I asked about the damage the inflammation can do to my body the doctor kind of dismisses it saying not to worry about it. I'm very frustrated because I know the doctor is wrong but what am I supposed to do? So I guess what I'm saying is I feel your pain but I don't have any good solution for you.
That's so wrong that the Dr dismisses your worries but it seems to be a common theme. I feel grateful that I can take a tablet to alleviate my condition and wish there was an alternative that you could take to help you. Perhaps a different Dr might be more understanding. I've been thinking of changing mine.
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