Trying to decrease prednisone

[Susquin]

I was diagnosed with PMR one and a half years ago, after having had symptoms of it for at least 12 years. I think because I would get symptoms and then have them go away I just thought it was normal aging. First time I had been carrying my 3 year old granddaughter up and down stairs all afternoon and the muscles in the front of my thighs were sore and very stiff, and stayed very stiff for about 3 - 4 months, didn't clear up until I got outside the next spring and getting lots of sunlight. Then my neck and shoulders would get really stiff and I put that down to tension at work, and working at a computer monitor for 10 hours a day. We owned our own business at the time and were spending a lot of time at work and were very stressed so I put the tenseness down to that. It wasn't until approx. two years ago that I got all symptoms together in the winter and could literally not lay down to sleep at night, I could get some small relief by walking around our pool table all night. I also had what was thought to be carpal tunnel at the same time. I was initially given a dose of 50 mg prednisone for 5 days which completely cured the problem, but huge withdrawal after the five days and all the symptoms came back.

I am wondering if anyone else takes any other supplements with the prednisone. I did also have my Vitamin D levels tested last winter and they were extremely low so currently take 6,000 IU's daily, took 5,000 all summer even though I was outside in the sun a lot. That seemed to help. I also take a Calcium/Magnesium supplement, a Calcium with Vit D3, Omega 3, and glucosamine/chondroitin (for a knee injury).

I am currently trying to stay at 5 mg of Prednisone and taking it every 36 hours to try and get off of it completely. I am having problems with blurry vision at night from dry eyes and understand that this can be caused by the prednisone.

My husband and I are also trying to switch to a predominately plant based diet in hopes of getting rid of the inflammation. Interested to find out what others are doing to overcome this disease as well as the prednisone usage.

[SnazzyD]

Hello and welcome. The PMR brains will be along soon but it is still early (UK). It’s great that you got the diagnosis after all the suffering and head scratching that many do when they trying to work out what on Earth they’ve done to make themselves so stiff.

I’ll just pick out a couple things. On the supplement side, vitamin K2 is good for helping that calcium to get to the bones instead of lining your arteries.

How are you now symptom wise? Is your 5mg every 36 hours a recommended plan? Has anyone explained adrenal function and reducing under 5mg? Has anyone suggested a slow steady reduction instead of see-sawing the dose?

Your eye problems at night. How exactly does this eye symptom take you? Why do you think it is at night and not day as well? Are you still not sleeping well? Have you had an eye test?

Sorry, that’s more than a few things but the answers will help with advice.

[Susquin in reply to SnazzyD]

Thank you for your comments and questions. The 36 hours came about accidently, had a bad bout of diarrhea and did not see the point in taking the pills when everything was going straight through, so took the pills when I started to feel the withdrawal symptoms. That was 36 hours and seemed to work so have stayed with it, it also partly explained to me why I never had the normal stiffness in the morning that others talk about, I think the dose I was on was more than needed so had not wore off in 24 hours.

I have been to my optometrist and talked to her about my eyes, she has given me some drops but I find they don't work very well. I only notice the dryness if I sit down in the evening to watch tv or read. Rest of the day it is fine. I have been fortunate and no issues with GCA although have been watching very closely. I also go to see my GP every two months and have blood tests done monthly to watch for diabetes which runs in my family. I only have problems with sugar levels at the higher doses of prednisone so as long as under 15 I am okay, and I can feel the difference in my body when glucose levels are too high.

Right now I have no symptoms and I think that is because I have managed to control or eliminate the inflammation with diet. My lifestyle has also changed in that I am not as stressed due to retirement and have a more active lifestyle than I previously did. My sleep is reasonably good as long as I am under 10 mg, anything over and I am awake at night. Normally in bed by 10 and sleep til 4 or 5. With a nap after lunch somedays just because I can. After years of being self employed and working 60 hours per week, naps feel good.

I do have times now when I have to sit through long meetings and am stiff when I get up, so do find that being more on the move all the time is better for me. I do a lot of gardening all summer and need to find things to keep moving with this winter or know that I will have problems again.

Thanks again for your comments.

[PMRpro Ambassador in reply to Susquin]

You probably don't need as much as 5mg - but the way you are going about it is not the best way of finding out.

I too find the antiinflammatory effect of pred lasts well over 24 hours for me - it varies from 12 to 36 hours or so depending on the person. I even managed well by taking double the dose on alternate days at one time and only stopped because I had some symptoms that could have been early signs of GCA. It is a recognised way of using pred for certain illnesses and leads to fewer adverse effects it is felt.

What you should be trying is to reduce the 5mg dose by slow tapering - some people do well on as little as 1mg or even 1/2mg. It is only by going about it that way that you can find the lowest dose that manages the symptoms as well as the starting dose. 1mg every 24 hours is very different in the context of PMR to 5mg every 5 days,

Many of us are supporters of slow tapering and this is just one example:

healthunlocked.com/pmrgcauk...

Above all, however, you need to get some 1mg tablets and carefully try lower doses. Remember that your adrenal glands are currently taking it easy - you cannot just stop taking 5mg pred, the tapering is also required for that.

[PMRpro Ambassador]

Why are you so scared of less than 5mg/day pred? Have you had your vit D level checked again to be sure what you are taking is OK? For most normal people taking that amount of vit D over a long time could lead to very high blood levels - which are also not recommended, although your comment that initially the symptoms were worse in winter had made me intend to ask about vit D even if you hadn't mentioned it because vit D depletion can cause similar symptoms.

I'd also ask exactly the same questions as Snazzy has because information is needed to make suggestions.

I had dry eyes and other visual problems because of the autoimmune part of PMR - nothing to do with pred at all, I wasn't on it. In fact, the problems improved once I was on sufficient pred.

We have had several vegetarians and even vegans with PMR on the forums - that isn't a guaranteed answer either.

[Susquin in reply to PMRpro]

Thanks for your comments. I have had my Vit D levels retested and am staying in the suggested range even at the higher dose even while being outside a lot all summer. My original reason for asking to have them tested was that I had worked inside for 18 1/2 years and rarely got out in the sun, so had wondered if that was perhaps part of the problem.

I do have 1 mg pills and have been slowly tapering, the 36 hours came about by accident and when I did some reading I found that some others had found that worked for them so decided to try it.

[Gary1310 in reply to Susquin]

Recent vit D blood test was 54, doctor asked me to reduce intake.

[PMRpro Ambassador in reply to Gary1310]

How much are you taking? 54 is a perfectly reasonable level and that suggests whatever you are taking is probably OK.

[Gary1310 in reply to PMRpro]

...not sure because a couple pills contain added, Vit D. I supplement usually 1000 mg. and would add an extra 3/4 times a week. My GP likes no more 50 on test...said D is one of the vitamins that build up.

[PMRpro Ambassador in reply to Gary1310]

It is also a vitamin we use daily and if you aren't getting any from sun or a supplement it can fall - mine does over the winter if I don't take supplements despite being outdoors without sunscreen a lot in the summer. I suppose the answer is to have another blood test after a few months of less supplements and see if it is down.

[Gary1310 in reply to PMRpro]

I have a bi annual physical with complete blood tests. My GP is an Internist....my Rheumatologist asked me: “do you take Vit D supplements”....I said yes, he asked:” How many”? I took that to mean I need to take more than one, so I started to increase......guess one was enough.

[piglette in reply to Gary1310]

You can overdose on vit D although it is very unusual. It is worth just taking what is recommended by your doctor though rather than boosting it up. As I said toxicity isn't common and occurs almost exclusively in people who take long-term, high-dose supplements without monitoring their blood levels, also it is a waste of money for too many pills!

[HeronNS in reply to Susquin]

I'd follow PMRpro's advice about trying a slightly lower dose every 24 hours rather than stretching out the 5 mg. However I think the 36 hours sounds like a possible plan for those near the end of the pred journey when PMR is in remission and you are into the final taper. I wouldn't do it with active disease, no matter how well controlled. I know it's not quite alternate day dosing, but alternate day dosing is specifically discouraged in PMR/GCA although it is useful for some other conditions,

[Susquin in reply to PMRpro]

PMRpro I had to reread my original post to understand why you thought I was afraid to go below 5 mg. What I meant was that I wanted to stay down at 5 mg and not have to go higher to deal with symptoms. I totally want to get right down and off of prednisone and recognize at this point that I will have to take it very slowly and perhaps even .5 mg at a time. Have only just gotten to the 5 so think I will stay there for the month and try dropping another .5 mg or 1 mg in December, will see how this month goes.

[PMRpro Ambassador in reply to Susquin]

That's OK - that wasn't how I'd understood you. Always difficult to sort it out when we aren't face to face!

[piglette in reply to Susquin]

If you have pain at a particular dose, don’t try and sit it out, PMR will win. Also reduce when you feel happy, planning ahead may lead to disappointment when you are unable to actually reduce how you planned. We all want to get down and right off pred, but PMR is the dictator unfortunately.

[Daffodilia]

I have heated eye mask and drops for dry eyes