My PMR symptoms came out of no where when it attacked my pelvis/hip area so bad that I would scream initially when getting up,sitting down,or walking a few inches.My C Reactive Protein went from 50 to 90 to 94.8 which is off the charts since an 11 would have been bad. This went on for 3 1/2 months until my rheumatologist put me on Prednisone and in 2 days I could walk again but 6 months later I'm on 5mg in am & 2 1/2 at night.Even on steroids my tongue swells up with sores on the side 3 to 4 times a month,my teeth hurt like hell when I have anything cool or cold, my palms & 3 of my 5 fingers on both hands have tinglings & numbness several times a week & my friend said disease is attacking ulnar nerves which is what is causing the hand numbness.Once my C Reactive Protein finally went down months later to 6 my dr.told me to stay on 5mg in am but skip the 2 1/2mg at night. Overnight I could hardly walk & day 2 the disease attacked my shoulders for the 1st time so back on pm dose again but shoulder pain never went away on right side. I have gained 50 lbs. in 6 months & my feet & tree trunk ankles are gigantic. I eat less than ever but continue to gain a little every week ??Do any of you have so many weird symptoms & for those who also have the Giant Cell too, did you have the biopsy of the temporal arteries near the ear or did they just go by symptoms? It terrifies me that you can go blind from GCA. Thank you ! Tina
Hi Tinapoly1 -- so sorry to hear of your struggles -- I am not a doctor and I can't speak to your personal symptoms (esp re the GCA) but you might be interested in my post about NO prednisone -- you will have to do your own research -- and I would do it intensely and be alert to any cautions -- your symptoms are much much worse than mine -- there are natural inflammation reducers that work with less (or no) side effects -- I seem to recall that you can do it while on the pred. Someone suggested that too high doses of turmeric can cause anemia but my doctor wasn't too worried about that for me personally -- BUT again -- do your own research. Here are my lab results -- note that I was on boron, turmeric and serrapeptase for roughly about a month when I got the good results. YOUR CRP WAS off the charts!!!! P.S. These natural things are generally much slower than prednisine so approach with care. I am still struggling but see many little improvements weekly.
C-Reactive Protein Norm (per my lab) is <=0.29 mg/dL
5/10/17 12/6/17 1/5/18 3/22/18 5/10/18 5/29/18
0.33 8.52 18.20 3.75 2.37 1.09 --
P.S. it looks like your lab gives results differently from mine
It is important you never drop your prednisone dose rapidly, or stop it completely. You absolutely must stay on enough pred to control your symptoms. What happened when your doctor told you to drop a second dose of 2.5 you were taking was you reduced your dose by far too much overnight and your body was not ready for it. You now have what's called a flare. A dose of only 5 mg at six months is really very low. Most of us don't reach that level till months later. The average length of time PMR lasts is nearly 6 years, so there is no hurry.
If you have visual symptoms that's when to call your doctor or go to the emergency department. Otherwise just try to find the dose which relieves your symptoms as much as they did in the beginning and stay there for a few weeks before starting a much slower taper. Others will be along with more advice and help for you, although maybe not until morning in the UK. However you should be reassured that prednisone side effects are not as damaging as they had been thought, especially from the lowish doses we take for PMR. Most can be controlled, and we can help with suggestions about that. Getting late here so I won't go into any more detail.
Just to clarify though, for anyone reading your post, what is your pred dose right now? And do you take it all in one dose, usually with breakfast? That's almost always the most effective way to take it, although some people prefer to split the dose if the effect doesn't last for 24 hours.
Tinapoly, Sorry to hear of your troubled journey, I know the Prednisone side effects are horrible, but much better than the PMR pain and stiffness. From wheelchair to ski instructor in 7 months on Prednisone. The one thing I am of is do not rush, it has taken me about a year to get from 30 mg to 7 mg, which is okay because I have been PMR pain free. Think positive and try to smile. ☺️
And to go from 30mg to 7mg sounds extremely lucky by my standards. I have successfully dropped from 30 to 7.5mg on a split dose and I remain pain free with a near normal life but it has taken me 2.5 years.
Men are luckier than women and my 4 pmr men friends have all dropped from 30mg to zero pred in 2 years. Definitely better to be a man with pmr! Have a Smiley Day!
It is important to emphasise that this sort of approach alone is definitely NOT advisable for patients with any suggestion of GCA. It is fair enough for PMR as there is no serious risk involved when it takes a bit longer to resolve. However, not reducing the inflammation in PMR does increase the risk of it progressing to become GCA and then your sight is at risk if it affects the blood supply to the optic nerve. Then the only safe answer is pred to reduce the inflammation very rapidly.
There is no real reason why this approach shouldn't be used in tandem with pred in GCA but should only be done after the approval of your doctor.
I have suspected all along that that the 2 year figure so beloved of medics is found mainly in men! Though to be fair, I also know some women who got off pred in 2 years.
It is unlikely the disease itself is attacking a nerve - it is a vasculitis which means blood vessels are affected - but either the blood flow to the ulnar nerve is affected or the nerve is being compressed somewhere in the shoulder area. Which fingers are affected? The ulnar nerve supplies the little finger and part of the ring finger, so only two digits and you mention 3 - is it your thumb, index and middle fingers that are affected? In that case it is the median nerve that is involved, it is called carpal tunnel syndrome and that is quite common in PMR.
https://orthoinfo.aaos.org/en/diseases--conditions/ulnar-nerve-entrapment-at-the-elbow-cubital-tunnel-syndrome
https://orthoinfo.aaos.org/en/diseases--conditions/carpal-tunnel-syndrome/
Many people on all the PMRGCA forums have either avoided weight gain while on pred or lost it after having gained it by cutting the carbohydrate content of their diet drastically. There is a lot of discussion about it on the HealthUnlocked forum in particular.
Pred changes the way our bodies processes carbs and also causes random spikes of glucose to be released by the liver. More insulin is released to deal with it and the BS level falls rapidly and goes too low - leading to the familiar cravings for food to bring it back to normal. If you cut the amount of carbs you eat this is smoothed out and less insulin produced - the excess insulin is part of the cause of the weight gain as it causes excess glucose to be stored as fat deposits in the usual places: the midriff, on the face and around your midriff.
Eating in a low carb way changes the way the body produces energy - it has to turn to fat to produce it and that means the fat stores are used up. I had put on nearly 40lbs due to untreated PMR inactivty and then being on methylprednisolone for several months. By going low carb I slowly but surely lost 35lbs of the pred weight and the first place it went from was from around my middle - within 6 weeks my trousers were falling down as the waistband was too big! Then it went from my face. It really is worth trying. How much carb you can eat and still lose weight varies from person to person but most people can eat some carbs - just not too much.
Diana, I sometimes think being on an anti-inflammatory diet helps. There is no way to prove whether the diet helps; as I sit here and drink my morning shake based on wild blueberries and spinach etc. But after the pain I have had now eating the way I do and the DSNS tapering. I will not change one thing in my regiment. Now off for another 20 plus mile bicycle ride with several long hard climbs, working to stay in shape for another active ski season. Thinking positive with a smile on my face. ☺️
Thank you e50553, While on these natural supplements did you go off your prednisone slowly and are you still on a low dose ? My problem is that I have such a bad GERD problem along with a congenital defect in my esophagus where the prednisone stopped there 4 times and can eat a hole in my Shatzki's Ring blood vessels which can be life threatening .It felt like someone put a knife in it but when it does make it to my stomach most of the time ,within 10 minutes I have a giant acid ball come up in my mouth & choke on it at times. I have noticed that at times it had watery blood too which is scary when I read how long I might be on this drug, The problem for me is that I also had major problems with GERD when I tried turmeric prior to PMR since I heard of all the health benefits so I had to stop right away & I can't take the GERD meds. anymore. Yes ,my c reactive protein was off the charts for over 3 1/2 months when it finally topped out at 94.8 and I was told that I was lucky I didn'r have a massive stroke or heart attack. I pray it didn't damage my blood vessels to give me GCA but with it being left untreated for so long I am very fearful of that since my eyesight is more precious to me than anything. Thanks again, Tina
I went from 15 mg to 7 in six months, No problems once I found dead slow taper plan at 10 mg. I'm female. I was down to 3 mg in a year, but that was two years ago and I'm hanging around the 2 mg mark for now.
So happy for you,Michdonn. I would be in a wheel chair if they didn't finally put me on prednisone since the pain was so excruciating. So bad that I would put off going to the bathroom just 15 feet away because I dreaded the thought of a pain like no other. I would rather give birth to my giant daughter again naturally since this was so much worse & having her naturally was no walk in the park. Thank you !
Hi Eileen, The fingers on both hands that are going numb along with my palm are the pinkie, ring finger ,& the middle finger. The left hand has the tingling and numbness more than my right. I looked up the 2 sights and I am confused why my middle finger is also included. If vasculitis is the cause I worry that I do have the GCA too which terrifies me but one doctor said I was lucky to be alive after having having my c reactive protein at 94.8 for 3 1/2 months since none of my doctors knew what I had & didn't give me prednisone until I went to my rheumatologist. I don't eat much in the way of carbs but will cut back when I do. Thank you for all the info !
Thanks for your input Eileen !
HI TINA -- Your situation is so much worse than mine and I am so very sorry for all the suffering you have had to endure. Unfortunately, I don't think I have any recommendations for your issues. Just to clarify, please note that I was not recommending you go off of prednisone ESPECIALLY IN LIGHT OF YOUR GCA. I think my comments may have been misconstrued by some and I apologize for that. Also just to be clear to other readers, I am being monitored about every 5 weeks or so by my doctor who always does blood tests. I am doing the boron, turmeric, serrapeptase regime under doctor supervision. I did not try the low dose naltrexone that was recommended b/c I was afraid it would exacerbate some other issues I was having.
Anyway, I did prednisone for just a few weeks (10mg) -- just so I could be diagnosed with the PMR -- not long enough for my body to get used to it and then started with the other things under this integrative doctor's care. I have a lot of other health issues that prednisone would absolutely make a worse mess of than what I've got so I was scared to do it long term.
Yes, our bodies and all the various complications make a big difference in how each of us reacts to various meds and natural products. My neighbor had PMR a while back for 4 years and didn't seem to suffer any ill effects from the pred. She had to be on the pred b/c she was suffering from GCA and had to go off of it very very slowly. So far, its been several years and she has not relapsed in any way.
I live in Virginia, USA. I don't know where you live or what kind of a doctor you have access too, but I have found that a blend of allopathic with naturopathic combines the best of both worlds and has worked for me for the last 20 years. I have also found that even with my integrative doctor I - personally - must do a lot of research on whatever issue I have in order to work with him most effectively. I did try an allopathic rheumatologist for my PMR, but that was probably the worst doctor I have ever encountered. She didn't even give me a physical examination. Nor was she concerned about my medical history at all which is vital if she was going to put me on predisone. At the time, I was in a wheel chair and could barely move my arms.
For my research, I usually start with www.earthclinic and then read as many scientific articles and various blogs as I can find. I weigh everything. Oh, and I never get vaccines of any kind b/c there is scientific research as well as personal testimonies that vaccines can be one of the triggers for PMR, especially in elderly women. Articles I read noted that most of the women were in their 80's.
Tina - I hope you will be able to find some solutions to your many painful issues and I hope there is someone on this blog or elsewhere who will have better suggestions than I could offer.
Blessings, e
Hi Anhaga, How do you know when you can taper down from your 2mg or if maybe you might be in remission right now ? It seems everything I see has so many different ,average time frames for the length of the average remission. Thanks ,Tina
At this stage I simply wait until I feel well. This is what I did when going from 2.5 to 2. It actually took quite a long time, but I had a very active holiday during that time. After I'd been home for a few days I did the dead slow taper, actually feeling so well I might have done it a bit too quickly! I was as low as 1.5 last year but an attempt to go to 1 caused a flare and really set me back by, I think, a year. I don't know when I'll be ready to try 1.5 again. But I won't try until I don't have the daily niggles which are bothering me right now. After last year I think it better to just wait until I'm absolutely sure, so not until I feel as well as I did when I was still on 2.5 a few weeks ago. I guess I wait until I feel like I must be in remission, and then when I drop by .5 mg I find I'm not, but at this level I don't think I have anything to worry about in terms of pred side effects. It must be doing something good, it's keeping me mobile and active. I have to admit to myself that I still have PMR and I am a fortunate person that a dose like 2 is sufficient. I suspect I'll not be testing 1.5 for a while. Two might be my "lowest dose which controls the symptoms" - last year I hadn't been on 1.5 long enough to really know before I tried 1 mg. One really does have to be extremely cautious with the taper at these low levels.
You are welcome Tinapoly, I know the pain. I feel very lucky to have found the forum. With the help and knowledge from the forum I am leading a normal life with the help of Prednisone. Think positive and try to smile, smiling. ☺️
I am very grateful for everyone's input on this PMR & possibly GCA. You give me great hope telling me about your neighbor being in remission from GCA for several years now but I sure hope it won't take 4 years total to slowly go off the prednisone since I am having bleeding problems for a while now after just 6 months. I am soon to be 64 and I'm from Hollywood,Florida. I also worry about my bones since I had major osteopherosis at the young age of 37 when a moron GYN. took my perfect ovaries out after seeing I had no cancer or endometriosis but andenomyosis which would have been a 100% cure just taking out the uterus only after 4 years of severe uterine pain. I had a horrible reaction to every form of estrogen and got osteopherosis within a year along with fibromyalgia, Shojorn's,Hashimoto's,& tinnitis. It took me years of IV's to get my bones back & after watching my father who was a surgeon loose his ability to operate which forced early retirement & the 20 years on & off the prednisone he died a horrible death with a broken neck, fractured spine,and broken ribs from just coughing so this drug really scares me but I have to take it and hope for the best. I didn't get a vaccine this past year but I started a new thyroid drug for my Hashimoto's Thyroid Disease Synthroid is no longer working so I tried Cytomel and that week months ago I called my endocrinologist & said something terrible is happening to me. It not only was causing rapid heart beats but arrithmias too in addition to my initial PMR reaction the 1st week. Maybe it was a coincidence but I will never know. I also have a rare disease eating my left knee which there is no cure for the diffuse PVNS. It came back in 4 months & I am worried about my weak immune system from the Prednisone since it will help the disease get stronger.After many surgeries with it coming back for most when it is in the knee ,amputation above the knee is the only sure cure. Sorry for rambling on and thank you for sharing your story with me. When I get something new I read like crazy to educate myself on it . Do you know if your neighbor have the temporal artery biopsy to confirm her GCA ? Take care & thanks again.
Why not speak to your doctor about having depot-medrol injections to manage your PMR? They are now included in the recommendations for the management of PMR:
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
Recommendation 5 is the relevant text.
I have paroxysmal atrial fibrillation - and it was almost certainly caused by the underlying autoimmune cause of the symptoms we call PMR attacking the electrical cells in the heart and it started within a short time of the PMR symptoms appearing. It is very well managed most of the time but interestingly, recently I had reduced to 7mg and after a couple of weeks realised the a/f was back every afternoon. It was much better at 8mg, just occasional episodes, and at 9mg it was entirely gone. The rheumy just looked baffled!
Something else to discuss with your rheumy might be trying Actemra if you do not have any contraindications for it. Quite a few doctors in the USA seem to be able to arrange funding for using it in patients with PMR (it is very expensive) although it is approved for GCA and no official clinical trials have been done for PMR.