I was diagnosed with giant cell 2 years ago and am now on the drug methotrexate. After the first eighteen months I felt better but still have periods of tiredness, feeling unwell in the monrings with regular pain in my neck arms and neck. I also have pains in my knees in the night when they are together.
People ask me what is gca and I try to explain even giving them notes from the internet..after a while they forget all about it
very odd!
Polly
did you have pmr first? Or do you have PMR now - after the giant cell? What were your symptoms? were you ever on pred?
yes i had pmr first before giant cell. early symptoms were extreme stiffness in joints tiredness. then came no wrist pulse measurement and great difficulty in getting blood pressure measurement, I am on a low does of prednisone
how about you?
Polly
female - 53 - great health - got parasites living in brazil in 2006...4 months later had hip pain, then back pain then groin pain...no relief. hip and groin pain are gone but then shoulders stiffened up, neck gets stiff, upper back and lower is all bad pain...knees are so stiff in morning couldnt bend them...arms hurt - cant pick up my purse. High sed and cpr....rhummy said probably pmr....took 10 mg 10 days - kinda better, then 7.5 mg for about 16 days, less better...I decide to see another doctor and get off pred and educate myself about inflammation and pmr and giant cell. Now on 5 mg pred and am god awful but will see dr next week and i already said i want off pred. I bought 4 books and am studying diet and supplements and lifestyle...
No headaches or vision problems before the giant cell? I thought that was a sympton? I have normal blood pressure but my blood draws are so hard - the blood just wont come out....takes forever....what is your sed and cpr numbers?
Hi Polly, welcome to our group. And hi Smartie, how are you? I have been reading a lot of material, going over the old question of "does not treating PMR with steroids increase the risk of developing GCA?". Read masses of stuff and while doing it found a good article that examines the relationship between the two conditions. http://www.aafp/20061101/1547.html
I agree - the best i felt is when i took 10 mg in the evening and then 10 mg the next morning ...ok for 2 days then moderate discomfort when i was taking 10 every morning....then worse at 7.5 then really really really bad at 5....i have to change drs...i have one who will not communicate with me....i think i have a good one to see next week. I will see what he says.....I never thought anything like this would ever happen to me. I may still be in the mad stage.. if i can get relief with non steriodals (and i was before the pred) or over the counter which i did not even try......i would rather go that route...i will see what this doctor says....his specialty is research and he is from a prestigious medical school...i have high hopes.
In the meantime i have read enough to know i have to get off ALL sugar...and no artificial except Stevia. That and other lifestyle changes.....does anyones sternum hurt? my chest hurts when i breath deep or sneeze....and sometimes my collarbone hurts...wierd.
Pre pred I hurt from my chin to my knees... including sternum, neck,PGR
It is my understanding that at 10 mg, they should all be taken in the am. You want your adrenial gland to start or keep working. You can suppress it by not letting it do it job at night. Last thing you want is for it to fail. That was my very first questions on this site. My Rummy and others here, stated strongly to follow that direction. I am at 2mg-decreasing 1/2 every 4 weeks. My Rummy gave me Relafen to help with the decreasing pain of prednisone. I take that as needed. And thankfully needing less.
Lonna
Coincidence or not? I boosted my vitamin C supplements by 1500 mg/day (500 mg 3x per day + another 500 mg from another supplement) and after a few weeks I almost feel like my PMR is gone! I have been reducing my prednisone dose by 1/2 mg every 2 weeks (i.e. 1 mg/mo) and have had no withdrawal symptoms to speak of. I am now at 7.5 mg.
However, I am not going to get too excited, because I felt this way last year at 4 mg, then my PMR got worse again so that by spring I had to go back to 15 mg/day when I started having migrating pains in my wrists and fingers that affected my job (much of which is computer work), as well as occasional "frozen shoulder" episodes.
Anyway, vit. C might be really helping me (as it did someone on another discussion list) - it's cheap and no serious side effects, so worth a try!
thankyou for you r recommenddation re vitamin c
all the best to you and hope it helps
Polly
i bought some great books and have been skimming through them....most say 2000 mg of Vit C for inflammation. ALso...the one supplement that all sources say is the most important is omega 3 fish oil....i will report back with more detail but dont buy cheap store brand - you will need to take more for the effect....if they smell or taste fishy - no good. I found a good one that is third party certified...Nordic something. You could notice a difference in a month...remember when parents spoon fed their kids cod liver oil? That was a real good thing....I urge all of you to go to the library or buy the book - The anti inflammation zone by Dr. Barry Sears....there was great information there.I reemember that cod liver oil. What was that for anyway? I have been pred free a week Saturday. So far so good. I am still on the no sugar diet and it has helped me so much. I plan to look at Dr. Sears book at Borders next time I am in there.It has been quite a while since I posted anything, but I have been keeping up to date on all the other posts.
I am not sure who first mentioned Vit C, but thank you. I am always looking for something other than Pred and pain pills. Starting this morning I am now taking 2000mg of Vit C. I have been taking 1 tsbp of very good 'fish oil' in my 'shake' every morning and I take Omega-3 cap also (maybe overdoing it, but I want to be rid of this PMR and Pred)
Speaking of Pred I have a question.......I started out in July on 25mg/day, was up to 30mg for a couple of weeks in Sept. Down to 25mg Sept 21st at which time I started reducing my dosage by 1mg per week. I am now at 16mg/day and feeling the pain, but not totally unbearable. My question, I am reducing too fast and taking the chance that my PMR is getting worse?
Also look at The Inflamation Syndrome by Jack Challem. He goes into more detail about the omega 3. I read you want the combination of Epa and DHa....be careful if you take blood thinners - the fish oil has the same effect. This book says if you have a form of arthritis take at least 3 grams daily of omega 3 fish oil. If you never eat fish you may want to take at least 5 grams. There is lots of differnt information so look at the books and any others you see and do the research.Here is a good link with a Q/A with Dr. Sears...
I found this about Rheumatic arthritis, which is very similar to pmar, I guess: Visit http://www.ahrq.gov/clinic/epcsums/o3lipidsum.htm ahrq is Agency for Healtcare Research and Quality under US Dept of Health & Human Services
Rheumatoid Arthritis
Among nine studies reporting outcomes in patients with rheumatoid arthritis, omega-3 fatty acids had no effect on patient report of pain, swollen joint count, Erythrocyte Sedimentation Rate (ESR), and patient's global assessment by meta-analysis. A previously performed meta-analysis2 reached the same conclusions for swollen joint count, ESR, and patient's global assessment. That meta-analysis found a statistically significant improvement in tender joint count compared to placebo (rate difference = -2.9, 95% CI, -3.8, -2.1). The one study that assessed the effect on joint damage found no effect. In a qualitative analysis of seven studies that assessed the effect of omega-3 fatty acids on anti-inflammatory drug or corticosteriod requirement, six demonstrated reduced requirement for these drugs. No studies assessed the effect on requirements for disease modifying anti-rheumatic drugs. None of the studies used a composite score that incorporates both subjective and objective measures of disease activity, such as the American College of Rheumatology response criteria.
I eat fish at least once a week and I take an Omega 3 capsule each day during the winter season
Ragnar
thank you very much for your reccomendation
all the best
Polly
Whip-cracker,
I'm down to 7 and I take 5 in the morning and 2 at night. I read all the advice to cut out the evening dose so the adrenals can start taking over, so I'm going to gradually cut the evening dose and leave the morning dose alone. Monday I'll go to 5 and 1 1/2 for a couple of weeks, and if O.K., 5 and 1, etc.
I took Plaquinol for two months for my hands and it had no effect. My rheummy thought maybe I had a little RA in my hands. I still have trouble clenching my fists in the morning and it gets a bit better during the afternoon. I think there are a lot of symptoms, such as sore butts and sore knees and sore hands that result from PMR but are not recognized as "classic" symptoms. I used to be very sore in shoulders and hips, and now am pretty good in the shoulders. Most of my soreness is in the hips and knees, which causes me to walk like a drunken sailor in the morning, and like a sober sailor in the afternoon.
I've never been pain or stiffness free, but have been able to handle it so far, and would be happy to achieve no pred status and still have some "nuisance" symptoms. Meanwhile, crack that whip, keep 'em rowing, and break open the rum and cigar stores...a round for everyone!
Way to go Bob, rowing must be helping you got off the pred. I am pred free as of a week ago.
I am wondering if anyone knows. I have an allergy to all fish but, can I take the fish oils.
People with allergy or hypersensitivity to fish should avoid fish oil or omega-3 fatty acid products derived from fish. Skin rash has been reported rarely (205; 244). People with allergy or hypersensitivity to nuts should avoid alpha linolenic acid or omega-3 fatty acid products that are derived from the types of nuts to which they react.
nana,
current state of wellness &nbs p; amount of epa and dha required
no existing chronic disease ; 2.5 grams a day
existing obesity, heart disease, or type 2 diabites 5 grams a day
existing screaming pain (chronic pain - us) 7.5 grams a day
existing neurological condidtions greater than 10 grams a day
did you notice that you are looking at epa and dha...that is what is important. Look for high quality pharacutical grade fish oil.
And do your own research. Everywhere i have read has touted omega 3 (dha and epa). I visited a site that showed a lot of medical research that was very promising - I do remember Yale as being one of the groups - if i run across it again i will post it. I would not expect overnight changes but I will let you know - I am doing this now, among other things.
Thank you, smartie, and all the others for the invaluable information and links. I am going to increase my Omega-3 from 1 cap to 3 caps which will give me the same as the Dr. Sears supplement. Also, I take Flax Oil (1 tbsp) each morning, although Dr. Sears states that it is a lot slower acting as an anti inflamatory than Omega-3, but still has value.