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Posts (14)

Mar 28, 2017 · Tapering off of Prednisone in Polymyalgia Rheumatica (PMR)

Hi,I have been on prednisone since sept 2015 with perhaps two one-month break during this time. The dose varied from 40 to the current 10mg/ dayI have MRI confirmed osteo necrosis and family confirmed memory loss & personality changes.I am mentally poised for a remission of my ITP after Rituxan infusion.  Talk about positive thinking!!!  Now I am eager to get off prednisone.I will see my hematologist tomorrow and pray she will agree with alternating days of 5 & 10 mg per day. – or better yet go for 5mg/ day.   I’ve been down the road of aches & fatigue when I went off it but in the interest of not having worsening bones I want to be tapered asap….It saved my life but I cannot b a cripple for the rest of my time !!!A

Mar 20, 2017 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

wow – sorry to hear you have such hard time even from 4 to 3mg (such low dose). I am currently on 10 and I doubt this dose is supporting or sustaining my platelet. Therefore I am thinking about asking tmy doctor to consider 10mg one day and 5 next day type of tapering…I am so fearful of this downward trip from past experience.
My tendonitis at shoulder is keeping me in throbing pain 24/7- I do take Tylenol but it is not an anti-inflammatory drug. ?Aleve is anti inflammatory but the pharmacist seems to think it (Aleve) may drag down platelet. I sure dont need that at this point.
I use LivRelieve and I use Voltaran and I use Traumeel gel (homeopathic). 2 days ago I got hold of a medicinal balm contarining 500mg THC in 30mL. The THC cream only tried once and I had an odd sensation from it so I stopped. (I never smoked marijuana.)
So far I feel all of the topical stuff only ease the pain very temporarily……
Bottomline is I am quite miserable….

Mar 16, 2017 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

My dr seems to have a different way of tapering: I am at 10mg now and last 2 or 3 weeks I have been on 10mg alternating with 15 mg/d.
I know the next order from her likely will be 10mg alternating with 5mg. But I am already noticing the profound tiredness and the achiness of the body. My dr has never ordered half mg during tapering…. but interesting concept.
I also go to naturopath clinic which gives me adrenal support during the tapering days. After I take the tincture, my body feels hot…
I dread this downward ‘trip’…

Mar 14, 2017 · Chronic pain and medical marijuana in Chronic Pain

That is the key question : how it affects the platelet. Several shops were raided by police here and even though Canada has legalized the medical use, very few doctors have prescribing knowledge.
Everyday about 10 hours after I take my 10mg prednisone, (ie when the effect of prednisone wears off, the throbbing pain starts across the shoulder and neck.
Now I begin to understand why people with severe chronic pain, death is a good option…. Good thing I am going for accupuncture tommorrow and ?ultra sound treatment of shoulder (it’s called tendinosis and a? torn cartilege inside the shoulder).
ANyone with good exp with osteopath?

Mar 14, 2017 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

I can imagine the damage it does to the bones when, in your case you were young when taking it.
I am 65 now and have been offered cortisone injection to my hip when the pain is unbearable then hip replacement.
(Been on it since Sept 2015 and still cannot get rid of it).
May I know where did they do the bone graft? around the hip? What did your doctor go by when they told you hip replacement was necessary??
My MRI did confirm oesteonecrosis of the hip but the pain is at the femur usually….I am at 10mg now and dreading tapering as I had the tapering course before and I honestly move and walk like a cripple!
I also have painful tendonitis of one shoulder – not sure if related to platelet being up and down or the prednisone. Have been told this prob last from 6 mos to a year. Dont want to rely on Tylenol all the time as pain relief so thinking about asking for medical marijuana.

Mar 14, 2017 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

HiRe side effects from prednisone I have been on this wonderful (it saved my life) but toxic drug since sept 2015.Most of time I was on equivalent of 1mg/kg weight.To me the two most horrible  & irreversible side effects are osteo necrosis & ? Cataract – not to mention being hyper &/or low energy & depression during tapering. I am fearful of needing a hip replacement prematurely.I have not needed insulin while on prednisone. I think I achieve this by checking my blood sugar several times a day and walk or eat accordingly (a half hour speed walk can half blood sugar!) I eliminate simple sugar or juices from diet and don’t over eat.  I have been able to maintain my weight.Hope this helps!A

Mar 10, 2017 · Taking Prednisone for Immune Thrombocytopenic Purpura in Autoimmune Diseases

My hematologist hinted Rituxan’s effect is not as fast as prednisone (with prednisone, one can expect platelet to bump in by 10 weekly when on 1mg/kg weight). That is why I am still on (tapering) prednisone, as a support for platelet. Also slow tapering is necessary so I dont become more psychotic….been told by my son I have RoidBrain!!
I remember being told one can see result from Rituxan about 2 weeks after the last infusion?
I sympathize with you being on 60mg prednisone – I opted to daily frequent blood sugar checks and using walking (1/2 hr only) to lower the sugar. Of course diet is big part too. Not easy but now a semi- pro in dealing with this monster or wonder drug of the 20th century!
Forge ahead and look for sunshine when cloud dissipate! Not unusual when you feel so down and so much in disbelief!