Let me clarify. I have been off prednisone since late last year at the request of the rheumatologist. They do not believe I have PMR. Since I have been off prednisone I have not gone a day without pain and stiffness. My inflammation markers continue to be high. My day is truly predictable at this point. I wake up stiff. Muscle relax from early morning to afternoon. Evening to night I stiffen up until I go to bed. Everyday is the same song and dance despite amount of stretching, exercise and/or NSAID consumption. Some days are worse than other days, but always the same.
Ok, here is the root of the question. I know prednisone worked. It took the pain and stiffness away. Yes, the side effects were unpleasant and honestly sometimes worse than the PMR. The PMR like symptoms are predictable where the prednisone side effects were not. Although, it did take the pain and stiffness away. So, here is the question.
Would it be ok to request from the doctors to be placed on prednisone for a temporary relief of symptoms? The wife is wanting to walk the Camino De Santiago in May. I truly would like to accompany her. I know from my previous experience when taking prednisone I felt a relief and a great sensation of mobility when on prednisone. The side effects were minimal at first, but the longer I was on them they became worse. So, I would not want to be on them for a long period of time. No more than a month or so. Is this a feasible request from the doctor? I know taking prednisone is not just for temporary relief of symptoms, but to cure the disease. When you have doctors that do not believe you have it than what can I do.
Last point since it most likely be asked. I will provide an update. Currently, the Rheumatologist has me taking more blood test for rare conditions. They are concerned that my inflammation markers continue to be high and the long term effects on the body. They are not kicking me to the curb yet. They even have called this an atypical PMR like condition, which is more than they have in the past. They even called it "baby PMR", haha. I have seen videos of those who have PMR, and I do agree mine is minimal compared to most. Perhaps they are waiting for it to get worse until they truly treat me, I do not know.....
Thank you for not kicking me to curb in this group. I do respect your opinion.
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It's not whether we think it is reasonable or not - it is whether you can find a doctor who'll do it for you. To be fair, I had had the symptoms for 5 years by the time I had worked out for myself that it was more than possible it was PMR and my GP referred me to a rheumatologist. He didn't think it was PMR - I think he thought it was beneath him - BUT he did give me 6 weeks of pred as a taper to get me through a business trip to the US with my husband,
Within 6 hours of taking 15mg I could move normally although I still had some bursitis pain. I had 2 weeks each of 15, 10 and 5mg/day and stopped. Six hours after missing the first 5mg dose I was in more pain than I had been before, or at least, that was what it felt like. I had kept a diary to show the rheumy at the follow-up appointment but in the meantime I had been in so much pain I'd been back to the GP - who had known what had happened at the start and he had provided more pred to get me to the specialist appointment, I didn't actually see him - but a GP with a special interest who was stumped and fetched the specialist. He pontificated it wasn't PMR - not sure why, it was text book except for normal blood markers - but inflammatory arthritis of which there was absolutely no real evidence. Luckily, a different GP disagreed, she thought it was PMR and the rest is history. There is STILL no sign of inflammatory arthritis - nearly 14 years later.
So if you find a kind doctor they may let you have a short taper like that - not long enough really to develop problems and you might manage the pilgrimage. But beware - that is a toughish walk! Most people with well managed PMR would quail at the journey and the time difference!
Thank you. I do recall your story. What I did not know is the fact the symptoms were worse following the initial trial on prednisone. I would say the symptoms for me are different after the 10 months on prednisone. Worse in stiffness, but pain is less. Although, I religiously take 200mg celebrex twice per day along with tylenol and I am no longer working. Perhaps if I was pushing my body like I did in 2021 than yes my pain would be worse. Definitely the stiffness is worse.
Yes, they believe it is inflammatory arthritis with me as well with no signs to state this. I will propose this to the doctors, but do you think the symptoms would be worse following the prednisone respite period?
I thought it was worse - maybe it was just in contrast to the 6 weeks of no pain I had had. But I had been fine on 5mg then - I never got down to 5mg again for several years and it only lasted about a year before a massive flare in symptoms for no apparent reason.
I notice you are in the States, is there a Mayo clinic near you - if so try and get to see them.
As PMRpro says, the the Camino De Santiago walk is hard. Friends of mine, all four of them and in their sixties really wanted to do the walk. They realised is would hard, so they compromised, 2 stayed and drove the car and when the two walking tired, they switched.
We are planning to do the shorter walk from Porto to Santiago. Yes, 10-15miles per day is going to be a challenge for sure, hence I need a backup plan. My wife is determined to do it so I want support her. Plus, I am coming up with a backup plan to take public transportation if needed, and we are staying in hotels.
Hello! I did the classic 100kilometres stretch of the Camino, from Sarria to Santiago in 5 days in 2019 while on 10mg of Pred- I had been diagnosed with PMR a year before and had tapered slowly from 15mg to 10mg when I did the trail. I was (and still am!)an experienced hiker and found it relatively easy...and such a wonderful experience! Fast forward to now and having got to 2mg last year, I had a flare up of uveitis, another auto immune gift, and had to have a short sharp much higher dose of Pred to control it. Currently on 4.5mg, feel my PMR is probably in remission, just hoping the eye condition can stay quiet too! Im more active than ever since I retired a year ago, hiking at least 30 miles a week plus outdoor swimming. I know how lucky I am to be so active, and I really hope you are able to do the Camino...it was one of my most memorable experiences. Good luck to you!
I'm sorry you had bad side effects from pred. May I ask what the dose was you were on? Usually we start with a bit more than we really need in order to mop up all the accumulated inflammation and then taper (slowly and carefully over months to a couple of years) to the lowest dose which still controls the PMR symptoms. By then any pred side effects would usually be negligible. Pred is NOT a cure. There is as yet no cure for PMR. However it is worth noting that ongoing inflammation causes damage and it is possibly worth trying the pred again for long enough to see if managing the inflammation can be done at a low enough dose? The key really is to resist tapering too quickly. It's a balancing act. I've been on pred since mid-2015 and most of that time, after the initial taper, at 2 mg a day.
I think most of us are somewhat ambivalent about pred. Have a read of a little story I wrote near the beginninng of my journey. I might write it a bit differently now, but it certainly represents how I felt then.
I started with 20mg. After I got over the torment of the adrenals waking up from 7-4mg I felt fine. I would have been happy to stay at 4-5mg because below this the PMR symptoms returned. The only reason I stopped is because the rheumy told me to. Plus, I stated the NSAIDS alleviated the pain, but now I can honestly say this is not to be true. Yes, I believe the NSAIDS helped because I do have osteoarthritis and Carpal Tunnel in both hands, but did nothing for the stiffness, decrease mobility and discomfort with ADLs. I will read your story.
Yes, the long term inflammation is worrisome for sure. Interesting though, while I was on prednisone, my markers never normalized. Are they supposed to on prednisone?
My doctor was never too concerned about my markers, in fact the one I had who didn't diagnose me told me they were normal and the next one who did said they were normal for my age. I later learned that they were in fact high enough to be of concern. They did come down, but it wasn't until a few months ago they actually got into the normal range (and not just "for my age" finally CRP in low single digits). I've been on pred since 2015, fortunately with sensible care once PMR was finally diagnosed. I think I'd had it for some time, the last year before diagnosis very difficult. I thought I was dying.
Perhaps I should add that although the markers remained higher than they should have my PMR symptoms were well controlled, I have been a happy camper that way most of the past few years.
I must admit, I would not consider the Camino after I had my diagnosis of PMR. I think I would like to build myself up a bit before even contemplating it.
Yes, I agree 100%. I am doing in support of the wife. I walk 3 miles at least 5 days per week. It hurts, but honestly I feel better when moving than when I am still. It is the stiffness that gets me. I do not know, perhaps this differs than most. I do not walk fast or far, but I walk. What is the alternative, stop...
It could take quite a while at 3 miles a day. Porto to Santiago is 230km around 143 miles. I agree walking and taking exercise daily is a good idea if you have PMR, but the Camino is tough. Also staying in some of the pilgrim hostels is quite rough for someone with PMR.
Yes, we are planning the route from Porto to Santiago. We will stay in hotels, and not hostels. Back up plan is for to take public transportation if needed. I am primarily doing it to support the wife. I will be frank, I believe my wife is in denial of my condition.
You are describing an absolutely classic PMR symptom. When untreated I always found the first few steps taken after being seated for even a few minutes were excruciating. And then I'd be okay until the next time. Getting out of bed was a painful four-step adventure. And I still remember the evening it took me half an hour to get up from the floor after I'd been doing some lying down physio and yoga exercises. I don't think my husband was in denial, I think he was just oblivious. Even after I'd been taking pred for several years he still didn't understand the difference between polymyalgia and fibromyalgia, the latter getting all the press at least a few years ago, and thought I had fibro. (Not dismissing the suffering of fibro patients of course.)
Yes, this is why it always confused me when I see a Rheumatologist and they state I do not have the classical symptoms. Yes, I have full strength, no I do not have joint point tenderness, but I have the other symptoms. I do not know, I am not a Rheumy.
What you describe is me. In the morning the first 4 steps, yepper. I get on the floor and it takes everything I can do to get up. I walk in straight lines I am fine. I sit, I get stiff. I grunt when I stand from sitting position. This is me. I would count this as getting old, but this started when I was 49 years old.
S, is there any reason why you didn’t have the carpal tunnel release? I had both done, consecutively, and was back giving anesthesia for the following 15 years. On the other hand maybe it’s PMR related?
Hi Karen, yes I had bilateral CTR in 2020 & 2021. My hands are not preventing me from returning despite them hurting. True, my fine motor skills are not the same, but most what we do is gross. I have faith I would be just fine. Matter of fact, the last time I tried a PNB my right hand went numb. This drove me to get it checked it out. They did a nerve conduction test and sure enough found a deficiency. Got the surgery done shortly after. Yes, I brought this up to the Rheumatologist regarding the carpal tunnel. I have read there could be a correlation. They did not seem to care. It was just a coincidence they conveyed.
At this point it has been 3 years since I have been in the OR. They will not even touch me due to the gap. I had a locums call me yesterday and I told them the last time I worked as a CRNA was with your company. I told them if they can find a hospital willing to rehab me back to full competency than i will do it tomorrow. They did not seem to interested. My condition right now is predictable. I am stiff in the AM, I warm up as the day goes on and than return as the "Tin Man" in the evenings. Probably cannot do call, but I believe I can work days. I can imagine you hear the frustration in my voice.
Good news is I am not giving up. I have accepted the fact the OR is probably no longer an option. I will be going to orient with a ketamine clinic on Tuesday. Plus I have alternative clinics willing to hire me. May try GI, but I did that and hated it. Also, I may pivot and look into PMHNP where I can do telemedicine. I can do this at home and anywhere in the world. I can gain my experience with the ketamine clinic. Plus, I still have the university where I can teach. Although, probably just nursing school because 3 years out may not help me to teach CRNA school. I have not tried.
I don’t understand the technical details of your post but what I do hear is the frustration you feel at not having been able to work, and especially at the apparent lack of support in getting back into a suitable role. You are young, skilled, determined….if you don’t mind me observing that! I really hope you find a way back into your professional life, it is evidently so much a part of who you are.
Good luck with this as well as with the walk 😊Nextoneplease x
When I first went to a large hospital rheumatologist I had a complete work up: endoscopies(was anemic from PMR), extreme bloodwork for rheumatalogical diseases, cancer screenings. They found I had MGUs so went to the hematologist to r/o blood/marrow diseases.
Do you have the option to go out of Tricare for another opinion ? I wonder if the armed services have much experience with these diseases.
By the way guys seem to do better with PMR than ladies.
Yes, I went to the VA to get a second opinion. They concurred with the findings from Walter Reed and UCSD. They did mention the uptake in the bone marrow as evidence by the PET scan to be a concern. I had an appointment with Walter Reed the following week and they stated they wanted me to return for blood work to r/o blood/marrow diseases. I wonder if the VA spoke with Walter Reed, hmmm. This not the first time I am visiting a hematologist. So, I will go get the labs done tomorrow.
Yes, i have the full cancer workup to include everything you spoke of.
I am so sorry you are going through this. I truly feel your very bad pain. Short answer, My Rheumatologist gives me a dose pack when the kids and my grandchildren come, or we visit them. Actually, for any special occasion. I would certainly ask. I pray yours burns out. Hang in there. Oh, for a haha moment, my husband and Rheumatologist call it Evelyn's disease because I got it before 50. Otherwise, I had all the symptoms.
I know taking prednisone is not just for temporary relief of symptoms, but to cure the disease.
Did you really mean that , or have I misread? IF it’s PMR, baby or otherwise, there is no cure - Pred only manages the inflammation side in the condition.
Your intention to do the walk, and support your wife is admirable, but honestly not sure it is a good idea…but you are obviously determined to give it a go. So if that’s the case, then build in as much recuperation time as possible whilst in the walk.
By all means speak to your doctors, but don’t be disappointed if they say no to prescribing Pred as you request……especially as most of that time you will be away in another country.
Hi SMH4CRNA, if you can find a doctor who will give you the pred, take it and walk that Camino!! It’s not that tough, and you are young, albeit in pain!! I did part of it with my husband about 5 years ago and I still maintain it is the best thing I have ever done. The people, the landscape, the food, I could go on! We walked from Astorga, but I would love to go back and do the walk from Porto. If you haven’t already booked, can I suggest that you look at the Walks In Spain website. They are marvellous. You will be dropped off each morning and collected each afternoon and taken to the most fabulous accomodation each night. If you don’t feel like walking one day, then Paul will drive you and you can meet up with the others in the afternoon. Relaxed starts and long lunches in between. W in S will generally accompany a small group but you don’t have to walk with them, they just share the comfortable drop offs and pick ups. If you leave from Astorga you will also get to see some magnificent Gaudi architecture as a bonus. It is absolutely wonderful … so go get those pills, life is too short!!! Oh, and by the way, if you don’t feel like walking in the afternoon, you will be driven.
If you google "Walks in Spain", you will find the website. General walking sites might appear in your search, scroll until you see walksinspain.com blah blah, not sure exactly. You will find it. Good luck, I am envious.
Hi there. I agree with DorsetLady’s thoughts and that you should have a serious talk with a doctor/rheumatologist about your plans. To want to support your wife in her wish to undertake this walk is commendable but I do feel that you should carefully consider the possibility of symptoms preventing you from getting the most out of this wonderful-sounding trip and have contingency plans in place for any eventuality. Whatever you decide to do you have my respect and my very best wishes.
Just a comment that may or may not be of interest to you. Prior to being diagnosed with PMR it got to the point that travel was very difficult. I could drive/ride in a vehicle maybe 15-20 minutes and then the pain would gradually get so intense that I would have to stop and get out to move around and stretch for a bit before traveling for another 15-20 minutes and repeating. With the travels you are discussing, hopefully the problem I had hasn't become an issue for you.
OK, first off, Pred is not a pain reliever, nor is it a cure. There is no cure for almost all autoimmune conditions.
The pain relief you feel is the drop in inflammatory substances overproduced by your immune system. When you have PMR, your body "believes" it is under attack by some pathogen, and reacts by issuing "instructions" to your immune system to mount a counterattack.
What you need is a course of Pred that will tame that inflammation. You haven't specified what your previous dosage was, or what side effects you found so troubling, but you may find that a low dose is effective in relieving your symptoms without triggering big side effects.
So talk to your doctors about treatment, which should also provide pain relief.
Go for it I say! I am in New Zealand and wanted to get through a ski holiday this year in Canada and my rehumatologist gave me the go ahead to use prednisone if I needed to. I did need to and had ten fabuloous days skiing with my kids and grandkids. Only thing is you do have to do the tapering thing - cant just stop the medication so takes a while to get off it again - but worth it to still be out there doing it. Have friends who have walked the Camino from Porto and loved it.
If you only take pred for 10 days you CAN just stop it. Tapering is only necessary after a few weeks, even at high doses. Or you use a quick taper as I was started with: 2 weeks each at 15, 10 and 5 and stop,
Rheumy agreed to allow me to do a prednisone taper for upcoming trip to do the Camino Santiago. Total trip 15 days.
Question,
May 20th is start of trip. How do you recommend I taper?
Rheumy suggested 20mg-->15mg-->10mg-->5mg-->0mg in 3 weeks.
When should I start?
**I am excited to be without pain for first time in 5 months, but nervous about the side effects. I feel I should not start right when I am there, but to start earlier to evaluate the progress.
I would start a few days before leaving to give it a chance to work before you need to be able to do things. I wish he'd offered 4 weeks - more like my two weeks each of 15/10/5 which I was given for a trip to the USA, but without the walking you are aiming for.
i can do 4 weeks. It is up to me. I have plenty of prednisone to cover the next 3 months if desired. I was thinking to start May 1st to assist with training. Would it be ok to 15 week, 10 week and 5 for remaining of the trip?
After a week trial of walking 20 miles my body did not respond well. Hands and feet swell. Stiffness and discomfort at its extreme. I only take celebrex and Tylenol.
I will say this trial failed, and prednisone is needed to do the Camino. Took 10mg a hour ago without any other medications. I want to make sure if I do feel better it's because of the prednisone. This was not an easy choice since I hate prednisone. Found 10-15mg to work well previously. Went with the lower dose. Will use than taper down to a comfortable level in preparation for the Camino at the end of May.
Worst case scenario, I rent a car and support the wife on the walk. No need for my ailments to hinder her from her goals. Thank you for your support.
Worst case scenario, I rent a car and support the wife on the walk. No need for my ailments to hinder her from her goals. Thank you for your support.
Although you obviously would like to be with her step by step... think the above would probably be a sensible idea, then neither she nor you would be worried about how you are coping on a daily basis .. it's not ideal, but maybe the better option.
No longer taking celebrex and Tylenol. Pain 90% gone. Why do I suffer in pain and discomfort when I know what helps, but doctors refuse to give it. Don't get me wrong, I hate prednisone. Although, 6 months of discomfort trying everything under sun minus narcotics will not provide me relief as a small pill of prednisone. Small price to pay.
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