I am new here and so grateful for all the information

[lalar]

I have just recently been diagnosed with PMR. After some convincing and while waiting my 6 months to see a Rheumatologist my GP started me on 15 mg of Prednisone. I was advised after the first month to taper to 12.5 The vast majority of my pain and stiffness except for my hamstring and back of legs had gone at that point. Three days in and my pain was worse/stiffness and so I went back to 15 mg until advised of what to do next. I am not quite as bad as I was a couple of months ago before any Prednisone but getting there. My GP suggested I wait for Rheumatologist or bump up to 20mg. I was wondering about boosting it up by 1mg only and gradually. Suggestions? Thanks again for all this it has been a life saver for me to find this forum .

[DorsetLady PMRGCAuk volunteer]

Could try 20mg for a week to 10 days, as GP has suggested it...if it works drop back down to 17.5mg for another week, then return to 15mg. If you just try 1mg it may be enough, but if not, then you’ll add another...and so on. Hit it hard and be sure.

From then on it might be sensible to reduce by only 1mg a time. Not everybody can manage 2.5mg reductions.

[lalar in reply to DorsetLady]

Thanks so much for this information. Yes I am going to try 20 tomorrow and follow your advice.

[PMRpro Ambassador]

Creeping up rarely works. If it were me I'd do as DorsetLady suggests and try 20mg for a few days if 15mg isn't cutting the mustard - but 4 weeks osn't long, 6 weeks might be better. But the alternative is to reduce by 1mg at a time, 2.5mg is a big jump in the early stages when the disease activity is still fairly high.

[lalar in reply to PMRpro]

Thanks so much for the reply! Tomorrow up to 20 mg and I will keep you posted

[Grannyasbo]

Hi lalar. Welcome to this forum. I’m pretty new here too. Diagnosed a few weeks ago and just coming to terms with it all. And my learning curve has been steep. But I can highly recommend this forum to you and the info it contains and the sensible experience based advice and support it provides. Don’t know where I’d be without it to be honest. In a much worse space than I am I suspect. I hope you get the info and support to see you through. Welcome.

[lalar in reply to Grannyasbo]

Yes I think I felt so good initially I got a bit over jealous trying to get back to work and other activities like I used to. Boy was I hit with a reality check...now up to 20mg to get back on track and gradually get back down again! One day at a time

[Pixix]

The other replies are excellent as always and based on a thorough knowledge of PMR. I can only tell you my experience. When new 15mg was a huge relief but it never quite gave me that complete relief I hoped for! I upped it to 16mg and the change was great! After six weeks I reduced it by 1mg and it was fine and I tapered down (lots of info on tapering in FAQs and pinned posts. Good luck!

[PMRCanada]

Welcome to the forum. I see from reading your profile we are the same age and both from Canada. Glad you decided to up your dose to 20mg. That’s where my GP started me when I was diagnosed with PMR 3 years ago and I stayed there 5 weeks before lowering to 15mg. This cleared out all the inflammation that had built up in 6 months before I was diagnosed. Hope you get some relief soon!

I will say that the early months of my PMR journey were more challenging than where I am at now. You get to learn to read and listen to your body/symptoms. Coming to accept that you have an autoimmune condition may take some time as you work through all the emotions associated with diagnosis. I came to learn what I could control (diet, activity, test, support people), and what I couldn’t (level of disease activity, how it developed, if/when it will go into remission). At times you may also have to advocate for your health…you are the expert of your body/symptoms.

Remember you are not alone, and the fine folks on this site are filled with wisdom and compassion. We “get it” better than most others will given our lived experience with PMR/GCA.

[lalar in reply to PMRCanada]

Thanks so much for the caring post. This morning I took 20mg and have a appointment with my GP later this week. I live about an hour out of Vancouver in B.C. Where are you located? I have to sort thru everything as I went in to a very late Menopause, actually the same month that I developed PMR so its hard to figure out what is related to what? Anyways it is a journey and now I can slow down, smell the roses , read the posts and move forward. You didn't mention how you are doing after three years? What level of Prednisone did you level out at? I find it so frustrating that in B.C. we have a shortage of Rheumatologist and so the wait is 6-8 months which makes treatment an issue. Enjoy your day

[PMRCanada in reply to lalar]

I am located in Southwestern Ontario, in a small but functional town. Very happy to live here and grateful for our peaceful property. After 3 years I am doing quite well. I had tried to taper down my dose 3 times, and each time got to 8.5mg and flared. So I currently sit at 9.5/9mg. Once flare I experienced was due to an emotionally charged situation with a family member, so I am mindful of how stress can very negatively impact our conditions.

Shortly after diagnosis my (nutritionist) daughter helped me with a lifestyle change as I was obese and very inactive. Since being on pred I actually LOST weight (30 pounds, but 5 have creeped back on since Covid hit). I was able to get off my high blood pressure medication, and delay a scheduled knee replacement. I am more active now and (usually) do three 50 minute deep water exercise classes that have proven to be the best exercise for me and PMR. Our pool opens next week and I am very much looking forward to getting back into that routine as our community pool has been closed for 2 months now. I also walk a few times per week, (previously 50 minutes, but since I got covid working my way back up to that level). I even golf (with a cart) and play the occassional pickle ball game.

Life has returned to my adjusted "new normal", and there are times I forget I even have PMR, so that speaks to how much things have improved. I was able to travel (before pandemic), with no ill effects, and have learned who is supportive of me, and said good bye to those folks who are not.

My aunts live in Vancouver proper and I've been out many times to visit. It is a beautiful province! Hopefully you will be assigned to a rheumatologist who is informed and able to meet your unique, identified needs (rather than treat you with textbook directives the same for all patients). I will say that my GP has been wonderful, but my brief experience with a rheumy (only 3 visiits), was horrid! I quit seeing them after a short time despite them calling me directly to apologize for their actions and advice. We must advocate for our health and hopefully foster connections with medical professionals that are respectful and collaborative. You are the expert in your body and experience, they are skilled in science and treatments (hopefully). All the best moving forward!

[Bcol in reply to PMRCanada]

Not totally relevant to PMR but I have a big sister that lives in Ontario, beautiful part of the world and we love visiting when able.

[lalar]

I have never been back to Ontario but have always wanted to. So many beautiful places and scenery

I struggle with weight since perimenopause so am interested in what your daughter suggested. .portion control/ did you cut out any food groups - carbs? You should be proud of yourself that is not an easy thing to do as you get older. Good for you!

I started back up to 20mg but your right my first appointment with the Rheumy didn't go well at all. I asked if I could talk to him briefly over the phone to ask him how long he thinks I should stay on 20mg but he wouldn't take my call and I don't have another appointment with him until the end of June

I believe that stress and loss of a family member in December possibly helped this along for sure. I have just had some lab results come in but haven't gone over them with anyone yet - my CRP was flagged high 28.4 and my Cyclic Citrullinated Peptide Ab was flagged H17 and Positive for what PMR? or RA perhaps

You have given me hope for the future and to realize that I will feel better some day soon. Thanks so much again

[alliebc in reply to lalar]

I’m in Nanaimo and haven’t seen a Rheumatologist, only talked on the phone to my GP. Trust this forum, read all the FAQs and keep a journal of how you are feeling. Watch out for GCA symptoms, a small percentage of PMR get that. The best info is on here and remember that it can be a very slow progress down the taper. I am doing the Dead Slow Nearly Stop (DSNS) method below 10mg successfully now. My doctor put a standing order in at Lifelabs for a monthly CRP test, then I call him to discuss results and get more pred refills if I need it, but manage the day to day dose myself. Get a pill cutter as they only come in 5 or 1s here.

I have reduced carbs but not in the really strict way some have, but haven’t gained either. I do take Vit D3, Calc/Mag/zinc and Omega 3-fish oil supplement as loss of bone seems to be one of the main concerns with pred. Don’t be fooled by that false high that makes you feel invincible and nap when your body tells you! There are quite a few of us out there on the journey if you ask around. A friend of mine (83) told me she had it for three years when she was 60 and had some good advice. She’s going strong and none the worse from her encounter with PMR! Good luck 🤗

[lalar in reply to alliebc]

Thanks for all the support...finally my Rheumatologist will take a call from me this week

[lalar in reply to alliebc]

I have had no follow up blood work done for CRP since March. I have to look up the DSNS because your right I am getting great information here. I have had headaches right after taking my Predisone. My doctor wants me to monitor my blood pressure daily. Yes my 15 to 12.5 mg I think was too fast that's when the headaches started. I am taking the same supplements. I really appreciate you sharing this. Do you have a appointment with a Rheumatologist pending? If your from the Island I would imagine your wait time is like the mainland

[alliebc in reply to lalar]

No I haven’t seen a rheumatologist nor actually seen my GP only phone calls. I believe there is one in town according to that friend. She saw him when she was having trouble reducing through the lower doses. Her GP managed it before that but was a bit too old school fast taper too, which caused her problems. I actually printed out one of the scholarly articles referenced by PMRPro here and dropped it off at the clinic when my GP first outlined his similar plan. It was never mentioned by either of us, but from the next call on we were following the recommendations of the conference of rheumatologists not the old med school learned fastest taper to zero!

Below 10 mg Dorset Lady’s gradual taper method DSNS really seems to work well. I liked the phrase “you show your body the lower dose then go back to the higher dose for a few days” I printed it out and stuck it on the fridge with the dosage and dates written in. I’m now on 8mgs and we’ll see if it works between 8 and 7 over the next few weeks. I’ve been lucky so far with no headaches once below 12.5.

The drop in my CRP levels were amazing once on prednisone. I am now at 1! Long may it stay that way.

[lalar in reply to alliebc]

Wow that sounds great. I am glad it is working for you. I am off to find the list to do the same

[PMRpro Ambassador in reply to lalar]

Were both ACCP and H17 listed as positive? If you have a positive ACCP antibody it reliably suggests RA, either already or in the future:

"Positive CCP antibodies and positive RF, it likely means that you have rheumatoid arthritis. Positive CCP antibodies and negative RF, it may mean you are in the early stages of rheumatoid arthritis or will develop it in the future."

medlineplus.gov/lab-tests/c...

It isn't positive in "just" PMR.

Not sure about the H17 antibody except it is (I think) a rhinovirus antibody - rhinoviruses cause colds.

[lalar]

This was my Cyclic Citrullinated Peptide Ab

H

17.0

<7.0

U/mL

Pos.

Reference Interval: Negative <7.0, Equivocal 7.0-10.0, Positive >10.0

NOTE: New Method and Reference Interval

My Rheumatoid Factor <10 IU/mL wasn't showing positive

[PMRpro Ambassador in reply to lalar]

creakyjoints.org/diagnosis/...

is a good simple discussion. Their figures are different - but as your local lab says above 10 is positive with a new method, you very likely do have some form of inflammatory arthritis.

In the UK that would be enough for a good GP to fast-track you to a rheumy but since you have another appointment before the end of the month that is OK. However, it may be worth trying to reduce the pred dose before he sees you to allow the symptoms to appear because this is a bit more complex than "just" PMR and he will need to see them.

[lalar]

Thanks for the information. Yes the challenge here is shortage of doctors and specialists.

[PMRpro Ambassador in reply to lalar]

It's the same all over the world unfortunately. Mostly due to lack of foresight - we are the baby boomer generation and there were a lot of us. Now we are all at retirement age there i a double whammy: lots of doctors and other healthcare professional retiring and turning into the older generation who need more medical care. And apparently very few governments in the world thought about that so they cut training spaces to save money ...