My Story

[Lenore58]

H Everyone,

I have been following along for some time, but have never really told my story.

I’m in the U.S., in California, and belong to a few inline PMR support groups, but yours is by far the best I have found. I am a 65-year old female of northern European descent. Prior to PMR, I felt I was in the best shape of my life since I was young. I was walking and or hiking daily, and doing yoga 5 days a week.

Last July, after a time of stress and a heartbreak, I woke up one morning with an extremely stiff neck that was unlike any I’d ever experienced. A week later, I woke up with shoulders and hips so stiff I could barely pull myself out of bed. I waddled to the toilet slowly, and had to plop on it as my hips could not bend that far. I researched and recognized my symptoms as classic PMR. went to my very young new PCP (my long-time excellent one had retired.) She was skeptical about PMR, because she thought I was “too young.” I was 64, so that tipped me off right away that she wasn’t very up-to-date. My inflammatory markers were in the normal range, but as you all know, at least 20% of us do not have elevated markers. I was referred to a rheum, but he refused to see me because my bloods were normal range so “it wasn’t rheumatic.” My PCP reluctantly prescribed 10 mg. prednisone, and also cymbalta. She told me to try the cymbalta first (which told me she suspected fibromyalgia) which was advice I chose to ignore. At the time, my pain was very low, it was the extreme stiffness that was debilitating. The prednisone worked like magic within 24 hours. I felt like I had my life back!

After some months of feeling good, I began to taper. I got down to 2.5 mg., but then had to move out of my house of 30 years into a small apartment. I think the physical and emotional stress caused a flare, and my extreme stiffness returned, so I went back up to 10. This happened one other time under some stress, including travel.

I got new insurance and went to see a new rheumatologist. She did a bone density test: findings were osteoporosis in my neck, and osteopenia in my spine, hips normal. She wants me to take anti-osteoporosis drugs (which I do not intend to do at this point, after researching) and wants me off the prednisone. I had tapered down to 5, and almost 2 weeks ago she had me go down to 4mg., but it is not going well. I am truly hurting, this time more widespread. My neck is stiff and tight on the left side. There is also soreness/tenderness right on the bone where the neck and upper spine meet. My forearm muscles hurt every morning when I wake up. In fact, it seems I hurt a bit everywhere now. My knees (which were not stiff initially) do not want to bend, and they yell at me when I try to! I used to have great posture, but I constantly have to remind myself to stand up straight because it hurts a bit to do so.

I haven’t been able to do yoga for about a year, since this all started. I went on a Keto diet straight away after reading it had helped people avoid or get off of prednisone. I saw improvement for about two weeks, but then my symptoms returned as badly as when is first started. That’s when I decided to go ahead and try the prednisone. before the PMR showed up, I had developed tenosynovitis in my right ankle, which curtailed my hiking. That has healed now, so I can walk and hike. I’m disappointed about the loss of muscle tone and strength. And I’m discouraged by the current stiffness and pain.

I have also recently (a week or so) started to feel “constitutionally unwell.” Slight headache, fatigue, and sometimes wondering if I have a low-grade fever.

In mid-June I am traveling to the south of France to go to a painting school for 5 weeks. I lived in the town I am traveling to for 4 years. This is a dream-come-true for me to return and do something I love. I am hopeful that the joy of the experience and the much better food supply will help my health improve. But I need to feel better than I do in order to go.

As I mentioned, my inflammatory markers were in normal range. My RA factor test was just at the top of normal. there were a few tests that were out of the range at normal, but she said they were nothing to be concerned about. She just ordered some more blood tests recently. She is checking my thyroid (I am hypo; on levothyroxine) and also magnesium and phosphorus levels. She also ordered a 24-hour urine test to check my creatinine and calcium, I believe.

She also prescribed gabapentin and a muscle relaxant. I took the 100 mg. gabapentin at bedtime as she prescribed for 4 nights, but I stopped. It didn’t seem to help and I don’t want to keep adding more drugs.

I value all of your seasoned advice, particularly PMRpro and Dorsetlady.

Thank you for reading this rambling account.

[PMRpro Ambassador]

SHE may want you off pred - has she informed the PMR of her desires?

Just because you have osteoporosis doesn't mean the only answer is to stop the pred - as long as the underlying autoimmune part is active you will need pred to manage the symptoms. So you need the lowest effective dose (what you want anyway) plus a suitable approach to the osteoporosis. Either you need them or you need a different rheumy,

Since you have the trip planned, maybe she would let you have enough pred to take you over the trip? That was how I got mine originally - after 5 years of PMR symptoms, no-one would agree that PMR was the most likely thing. But the rheumy who wasn't interested in PMR even after my report of going from almost immobile to almost normal in 6 hours after 15mg pred, had at least given me a 6 week taper of 2 weeks each of 15/10/5 so I could go to the USA on a business trip with my husband. And a different GP accepted the result of that trial as evidence it was likely to be PMR.

[Lenore58 in reply to PMRpro]

Thank you for your thoughts, PMRpro. I agree that I'm going to have to go back up, stabilize, and start the tapering process again. It's too miserable to live like this. The last time I had worsening symptoms while tapering, I gradually increased, but ended up back at 10 before getting relief. Do you advise just going straight back to 10 before tapering? I have about a 60-day supply of 10's, I think, because my PCP forgot to halt my refills. I don't think I'll have trouble getting the drug in France, as my best French friend's husband is a physician there, and they are aware of my struggle.

I just resigned from a job that was a bad idea: it was 40 hours a week as a restaurant supervisor. The work was more physical than I anticipated, so I suspect that (and the 40 hours) increased my misery. I'm feeling hopeful that rest will help get me travel-ready too.

Where do I access the paper that you and/or Dorsetlady have referenced that helps one determine if they are having a flare or tapering too fast?

[DorsetLady PMRGCAuk volunteer in reply to Lenore58]

This gives details on dealing with flare -if that’s what you mean.

healthunlocked.com/pmrgcauk...

[Lenore58 in reply to DorsetLady]

Thank you!

[Lenore58 in reply to DorsetLady]

So helpful!

[PMRpro Ambassador in reply to Lenore58]

Gradual increases rarely help - you are not getting any relief and so you play catch-up. Just get stuck in!

[Mayadill]

Lenore, not at all rambling. i do so hope you get to go on your trip which sounds wonderful and I'm sure it would do you the world of good just to be there, if only you can get, if you see what I mean!

[Lenore58 in reply to Mayadill]

Thank you!

[Pixix]

I have both fibromyalgia & polymyalgia. I would be wary of trying Gabapentin…I tried it & the side effects grew over the weeks & were very nasty, then it also needs tapering, like steroids, ir very bad cold Turkey & other issues come around! I will leave it to the experts to answer the rest!

[Lenore58 in reply to Pixix]

Thank you for sharing your experience. I researched the drug and learned of the dependence that happens on it, so did not want to mess with that on top of the prednisone. Plus, I don't believe I have fibromyalgia...I think I've read that tapering off prednisone sometimes causes random muscular pain, so that's my suspicion of what's happening with me. I am so sorry that you are battling both painful conditions!

[Pixix in reply to Lenore58]

that’s ok, there are probable others here, too!

[ImC_]

I hope you get to do your wonderful trip. It seems as if 5mg is likely to ensure that … maybe try a slow taper to 4.5 when you get back? Perhaps your doc would accept that compromise; they seem to be in denial that prednisolone at the right dose for you, now, effectively manages your PMR.

[Lenore58 in reply to ImC_]

Actually, I was already hurting at 5; I see by re-reading that that was not at all clear. The 4 is even worse. I think I will need to go higher than a 1 mg increase.

[Viveka]

You have been on pred for less than a year and as everyone has said it seems like you need a dose at which to stabilise so you are living a quality life - this seems to be around 5? Possibly a wee bit more over the travelling period. There is plenty of time to do a slow taper when your lovely trip is over. Most docs agree that PMR takes 18 months to 2 years (which we know is usually too optimistic) so even on that scale you should have lots of time to reduce more slowly. Perhaps they can be persuaded that you need help over the travelling period so you can enjoy your trip, and then you will be happy to reasses. (Perhaps need new docs long term).

BtW on yoga, I have a physical class, but also do a lot of zoom/recorded yoga because I can pause and not do the things that aren't right for me/take a bit longer. Have you tried Tias Little in Santa Fe? I just did a course on yoga and the immune system with him and it was brilliant. I think you can get the recorded version which would be just as good.

[emsscot in reply to Viveka]

I just checked out the website but - knowing nothing about yoga - I couldn't see which course is for the immune system. Would you please let me know which one you took? Thanks so much.

[Viveka in reply to emsscot]

Unfortunately the course is only suitable for people who have a good grounding in yoga cause it goes into how postures, breathing, somatics, meditation etc can work on all the systems of the body to encourage homeostasis.

If you were intested in taking up yoga it's best done in person to get the basics. Some styles can be pretty strong so you'd need to look around for a gentle one. Best wishes.

[Lenore58 in reply to Viveka]

Hi Viveka,

Yes, I do believe I need to increase, but it'll need to be higher than 5, because I wasn't feeling well on that either. And you are right, I think I do need new docs!

I've been trying to get back into yoga practice using yin yoga (online) which is very gentle and restorative. Hopefully I can build some muscle strength again and expand my practice again.T hank you for the recommendation; I was not familiar with Tias Little. I looked online, and unfortunately that class is closed; there does not appear to be a recorded version.

[Viveka in reply to Lenore58]

Hi Lenore will investigate the course and PM you. V

[DakotaMae]

sorry for my late reply, but you (and your dr) may find this recent study interesting: “Except for cataracts, side effects in PMR patients treated with glucocorticoids and non-PMR patients were not statistically different, new research finds.” In other words, there’s no indication steroids causes or contributes to osteoporosis. practicalpainmanagement.com...

[Lenore58 in reply to DakotaMae]

Wow, thankyou; I will read this article!

In the bit of research I've done on Osteoporosis so far, it sounds like the dexagram (which I had) isn't that exact: human error from technicians can skew results, and it only measure density, not hardness.

[DakotaMae in reply to Lenore58]

Yes, I’ve been seeing that as well. My dr keeps suggesting I take meds so I asked him to do the hardness test next to prove I needed them. He was surprised I knew to ask for it and the subject has not yet come up again. (Hmmmm) I also gave him this same article but I’m afraid the only reason he read it is because he had attended a lecture by one of the authors and trusted him. But it seems to take a long time for them to change their thinking from old assumptions. We have to stick together. 😊

[Lenore58 in reply to DakotaMae]

Thanks again; I read the article, and it was quite encouraging. Top-notch researchers involved. I will ask for the hardness test and pass along this article as well. And yes on sticking together. This community is the best I have found!

[MrsMarigold]

Hi Lenore. As much as I read on this forum I should be a member! I’m on the lupus forum and I have that with other tag along autoimmune disorders. I also like the advice of a lot of the ladies here. Your story is similar to mine because I have a spine problem; Have had 2 surgeries of cervical spine. Has anyone suggested you seek a neurologist to see if your spine is the cause of your symptoms? Until I was diagnosed with my cervical spine problems I had very weak arms, legs, and that “bone” you describe in your back is C7 the last cervical bone before thoracic spine. I think a good neurologist and rheumatologist will help sort it out. Cymbalta is prescribed off label for many other disorders. I take something off label because I have EM or Erythremyalgia. I have fibromyalgia too and I’m grateful for these meds. Perhaps decide to have more confidence in your doctor’s decisions and try prescribed meds or find new docs. Without the rheumatic markers it’s going to be hard to convince a doctor of the PMR. I take a very high dose of gabapentin divided through the day as the damage in my spine requires it and I find it very effective. 100 mg is a tiny dose.

Please don’t interrupt all this as disagreeing with your diagnosis but perhaps seeking other avenues to make sure it is PMR and not something else. This is bad timing with your wonderful trip. I agree to take prednisone with you as you don’t have time now to anything else unless your thyroid tests and mineral testing shows something

Best to you, MrsMarigold

[Lenore58 in reply to MrsMarigold]

Thank you for your reply Mrs. Marigold. I do know that 100 mg.of gabapentin is a tiny dose. I don't want to become physically dependent on another drug that may or may not help unless I am sure it is what I need. It's not in my nature to simply "have confidence in (my) doctor's decisions" and turn my health decisions over to them, because much of the medical advice we get is based on guesswork, especially in cases like mine. When PMR hit me almost a year ago, I was quite healthy. No spine pain. No strange aches. I woke up one morning with the classic PMR symptoms out of nowhere: extreme stiffness in neck, shoulders and hip girdle. (I had very little pain, in my case it was almost exclusively debilitating stiffness.) I am convinced it is PMR because of the immediate resolution of symptoms by 10 mg. prednisone. My spine was not a bit sore at the time; that happened much more recently, maybe a few weeks ago. Perhaps I have something new going on, on top of the PMR, so your suggestion to see a neurologist may be worth considering. I will be going to a physical therapist for the 1st time on Tuesday, so I will find out if it is my C-7 or possibly T-1 vertebrae that is so tender, and see if they have experience in what may likely be causing it.

[MrsMarigold in reply to Lenore58]

Hi again. To clarify. “ It’s not in my nature to have confidence in my doctors’ decisions “ Well, it took me more than 20 years for my blood work and clinical decisions to align before doctors would agree that it is lupus. If not for my own perseverance I would be on antidepressants because they think I’m crazy. I had to raise three kids and it was hard without treatment. I’m still not satisfied with parts of my medical care and still seeking. I’m sorry you are going through this awful pain and indecision angst of prednisone dosage. I’ve gotten down to 3 mg. and I think that is my happy place. I start physical therapy this week for the same problem you mentioned above with your tendonitis from my heel to my calf. I have found swimming to be the most helpful gentle exercise and like you I love yoga and my ballet bar at home (we turned the dining room into my “spa” room lol. ) Hope you find answers soon for you and your trip!

[Lenore58 in reply to MrsMarigold]

What an amazing journey, good on you for fighting for a proper diagnosis, and staying as active as possible with all that you have going on in your body! 👏

[Lenore58 in reply to MrsMarigold]

P.S. I am so very sorry that you are dealing with multiple painful conditions. I can't imagine how discouraging and difficult that must be!

[MrsMarigold in reply to Lenore58]

I think chronic illness either turns us too much inward and sitting on a nail of pain or allowing it to change us to open our hearts to give and receive blessings from others. Thank you for your sentiments. Generally after so many years I have to laugh at a lot of it!!! xx

[Lenore58 in reply to MrsMarigold]

Beautiful! 🙌

[Southmead]

Hello

[Southmead]

Hello, You have similarities to my case. I too live in California, when my symptoms developed back in 2014 my doctor didn't grasp what the problem was. I sent her an email outlining my stiffness, pain, fatigue, etc. Another doctor picked up my email, recognized the symptoms and sent me a link outlining PMR. I ticked every box, thus began my now 9 year journey on prednisone. Also like you, was very physically active, hiking, biking and enjoying a healthy life style with the energy to do it. During these last 9 years I have tapered down many times to below 5 mg, before the troubles start and I go back up again to 10mg and begin the taper all over again. It's a bit like snakes and ladders. Thank goodness I discovered this site, it's been an incredible support and informative for me. I don't know what I would have done without it, as it seems most doctors don't fully understand PMR. I'm sure the advice and help you will receive on here with be of great help. Good luck..

[PMRpro Ambassador in reply to Southmead]

Whatever the dose is that you flare at consistently is the dose you are looking for - probably just above 5mg from what you say. If you don't push into that area below 5mg you probably WON'T flare and need to go back up. Your body is quite good at telling you what you need.

[Lenore58 in reply to PMRpro]

Unfortunately, the way I wrote my story made it sound like I was good at 5 mg. and became symptomatic again at 4. That is actually not the case. I started to flare when I went from 7.5 to 5. (Maybe that was too big a jump?) But I wanted to taper so badly, I just obeyed my doc and kept going. My big update is that after reading more on this site, including the article, cited above, and the posting about flares, I decided to add my dose to my starting amount of 10. I did that this morning. I am expecting to feel much better tomorrow; will report back.

[PMRpro Ambassador in reply to Lenore58]

It certainly was too big a jump. The recommended step down at all levels is 10% of the current dose - 7.5 to 5 was 33%. By going in such big jumps you run the risk of missing the dose you are looking for: the lowest effective dose. Below 10mg, all the guidelines say 1mg at a time maximum. but even 1/2mg can be the difference between being OK and not and all that happens when you overshoot is you develop a flare and have to go back to a higher dose and taper again. The more you flare, the harder it can become to control things again, It isn't slow when it works!

[Southmead in reply to PMRpro]

Yes it appears 5mg is the dose that keeps me on an even keel. As I’m now on 10mg to bring the flare down I will have to start the next taper down to 5mg again, see how that goes. Thank You!

[PMRpro Ambassador in reply to Southmead]

If you are only on 10mg for a week or even up to 2 weeks, you don't have to slow taper again, If you were fine at 7.5mg go straight back there after a week. But keep the steps small now, 10% of the current dose is what is recommended. At 5mg that is 1/2mg,

[Lenore58 in reply to PMRpro]

Thank you! That’s helpful advice!

[Lenore58]

Oh goodness, Southmead, I am so sorry you have been on this unpleasant journey for 9 years! Have you experienced and bad side effects from that much time on prednisone? Also, when you taper and then experience symptoms and have to go back up, are the symptoms different than when they initially appeared? Mine were classically localized when it first hit me. Now the few times I have tapered I have more widespread stiffness and mild pain. Does that happen to you?

Are you in Southern California?

[PMRpro Ambassador in reply to Lenore58]

Several of us on the forum well into double figures! I've had PMR 18 years, been on pred for nearly 14 - no adverse pred effects I can identify, certainly no osteoporosis, diabetes or Cushings symptoms now, I was Cushingoid while on methyl pred for a few months but switching to prednisone allowed me to lose weight with a low carb diet, I'm still overweight but I have been most of my life.

[Lenore58 in reply to PMRpro]

I am sorry you have been managing this illness for 18 years…and now I see why you call yourself PMRpro!

[Southmead in reply to Lenore58]

I haven’t so far experienced any Pred side effects, they periodically check my bone density and seems to holding up well. The symptoms are usually the same from the initial diagnose, however the stiffness is not quite so bad, and the brain fog and fatigue may be slightly worse. Some days I feel completely normal, then you remember what that was like. The good thing is this disease is manageable, could be a lot worse. I live in San Francisco..

[Ke115000]

Lenore, I wonder which part of CA you live in - S. or N. I ask only because I was diagnosed after we sold our home in sunny, S. CA of 40 years, to move to Bozeman, Montana - quite a drastic change. Quick background - I had no symptoms in S. CA as I walked everyday, went to the gym at least 3x week and we hiked in Montana on vacations for 20 years. However, I retired from a wonderful outside sales job that I loved, as my Company of 38 years decided to stick me into an Inside Sales job during COVID lockdowns (and I was miserable) on phones all day long instead of being out and about). I was in an entirely new job with no training and all my knowledge of my previous position was not utilized. I quickly realized it was Companys way of getting rid of me, as I saw it happen with others in my age bracket (68). Anyway, that, along with the stress of moving and not finding anyplace I wanted to live in S. CA, pushed me to "test-drive" Montana winters with my husband. Whoa.....the first ice storm hit Oct of 2022,. I started to experience severe stiffness and pain in my buttocks, both shoulders and sporadic carpal tunnel, fingers, knees - but always bilateral. I made an appt with a very competent Internist, who wanted complete blood workup, and Xrays of both knees, hips, shoulders, hands and neck. Within 2 hours, he diagnosed me with PMR. My CRP was 83 and my ESR was 16. I was put on 20 mgs. prednisone on 12/15/22 and by that afternoon my symptoms were 75% better, and the following day, 90% better. I found this website and believe it was a life saver......I, too, didn't want anything to do with prednisone, but I can see it has truly the miracle. I have kept almost all weight gain off, (I was already on Metformin for pre-diabetes), but I hate the muscle atrophy and pray I will get some of it back. I go to PT twice a week and that feels good, as well as to the gym 3x a week. I think the shock of severe and extreme cold weather was challenging, but I made it through winter and have followed the 10% slow taper to 5mgs (where I am as of today. I can tell you that I have minor aches and pains along with depression, and if I get stressed I can have a flare. But had I not started at 20 mgs. I don't think I would have gotten here ............hoping to continue to taper, but willing to go back up if I flare. The pain is not worth it when hurting as badly as I did. Acceptance and getting the support through a great dr., physical therapy, and lowering your expectations a little may help. I hope your France trip is wonderful..........and that you do go!! If you are in Orange County, I do know an excellent Rheumatologist if you feel you need someone better than you have. Oh, and my husband and I both got COVID in March of 2023. Paxlovid knocked it out in 2 days for me.......so on we go!!!