My Polymyalgia Symptoms but Giant Cell too?
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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
0 likes, 31 replies
Anhaga Tinapoly1
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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.
Michdonn Tinapoly1
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diana21296 Michdonn
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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!
EileenH diana21296
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Michdonn diana21296
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Anhaga diana21296
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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.
Tinapoly1 Michdonn
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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 !
Tinapoly1 Anhaga
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Anhaga Tinapoly1
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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.
Michdonn Tinapoly1
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Tinapoly1 Michdonn
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Happy to have stumbled upon this forum too by accident or I should say sheer luck ! It is great to have people to share information on these conditions that know & understand what we are going through with PMR & GCA when no one else, not even my 4 initial doctors when I couldn't walk initially,knew what I had until I went to my rheumatologist.
Tinapoly1 Anhaga
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I realize now how important it is to take it very slow and now my rheumatologist does too after him telling me to drop my 2.5mg ,which was my evening dose & stay on my 5mg dose in the morning but the next day I could hardly walk & day 2 it went into my shoulders for the 1st time so he had me resume the 2.5 at night but my right shoulder pain never went away since then so I wonder if I need to be on a higher dose for a while and eventually got back to the 2.5. My pelvic & hip pain are gone but not the shoulder ???
EileenH Tinapoly1
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That was a 33% drop in dose - was he crazy? The top experts say never more than 10% of the current dose and sometimes even that is too much. A few days at a higher dose might clear the shoulder pain - and then you CAN go straight back to the total 7.5mg because your body won't be so used to it after a short time.
Michdonn Tinapoly1
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EileenH Tinapoly1
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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.
Tinapoly1 EileenH
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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 !