Doe anyone know anything about this med or have taken it?? Have gone from 15 mgs of pred to 10 to 7.5 mgs since December when I was diagnosed with pmr. 7.5 was not cutting it and dropped it back to 10mgs and also started me on hydroxychloroquine. The hope is to get off of the pred all together. I'm taking both meds for now until my next appt. in July. Has anyone had experience on this med?
View 21 RepliesI saw my Rheumy last week and he is concerned about my being up to 9mg of pred for the past 5 months (from 4mg). I've been on pred for 28 months. Starting decreased to 8mg using DSNS method but notice the difference. It has been a week and it's not getting worse so I think it is withdrawal pain, not flare. Will try week two and see what happens.
My Rhuemy said he'd like me to try Plaquenil along with pred to see if I could decrease easier/faster.
Does anyone have experience with this and if so what dose of pred and plaquenil did you take?
Although my symptoms began a year ago I was not diagnosed with PMR until the end of July when the RA Doctor put me on a 15 mg daily dose of Prednisone. Within a week I felt like a totally different person. I thought I had my life back. In Sept my blood work showed my inflammatory markers had dropped to normal range. In three months the Dr wanted me to reduce to a 12.5 daily dose which I did. It only took about 4 days and all my symptoms were back full blown. She told me to go back to the 15 for a month and then try again. Again the same results and I went back to 15 for another month then dropped again. Same results. Only this time the RA Dr doesn't want me to increase the Prednisone but take pain meds to help me adjust to the lower dose. I ask if I can at least try lowering the dose slower she agrees so I go to 14 mg for two weeks then to 13 two weeks then 12.5 then 11 then 10. I want off the Prednisone as well having had many of the lovely side affects that come with taking it so even though my pain is growing I try to stick with it. I see my primary Dr for pain management. My blood work is showing elevated C reactive protein but my RA Dr seems to think it's an acceptable level. I start PT, and do a pain education class. Slowly the flu symptoms come back as well many nights sometimes all day. I break down many a morning trying to get up to start the day and often cry myself to sleep at night. I go back to my Primary Dr to see how to handle all the pain. She had put me on Cymbalta in January and I thought it helped some so she increased that. I don't like taking so much pain meds but I have to now to get through the days and nights. She does blood work again and my C Reactive Protein has doubled. I get a call the next day that she has talked with my RA Dr and I should go back up to 15mg a day till my apptmt with the RA Dr which was today. The thing is the 15mg is not subduing all the pain like it did before so here I am 7 months later back to where I started only I now have pain in more places than before. Today the RA Dr says she still wonders if I could actually have RA even though I am not manifesting the swelling in the joints that accompanies that. She suggests adding Methotrexate but I dont like adding yet another drug with its own set of side affects to the steroids until I research it. I have to increase the steroids now greater than the 15mg a day so I can have a life! I would like to hear any input/experience on the Methotrexate and just on the steroid use for PMR in general. I sometimes wonder if I was reduced too quickly !!
View 36 RepliesI'm now into about 8th month at around 10 mg, despite instructions and warnings from Rheumy. I'll stay as long as it takes but I'd like to know at what dosage and how long it takes for some of the side effects to leave. I'm speaking about things such as memory problems, tremor, purpura, balance loss, etc. I'm sure I won't see any improvement at 10, but it would be nice to look forward to losing some of the worst when I can get my dose smaller.
View 68 RepliesI love fruit and eat plenty,also i have Manuka honey, my question is as we have to be aware of diabetes should we be aware how much we eat, does our body process natural sugar in a different way to processed sugars.Just a thought, been awake and up since 5.30( and was hungry so thought have some fruit before breakfast then thought am i having too much)
View 19 RepliesI've been experiencing some aches and pains over the past few days, it started off with aching in my wrists up to my elbows, now my joints in my legs and ankles are aching, also a bit of a stiff/ sore neck and top of spine is sore. In general my whole body is aching, feels sore to touch, throbbing and from time to time can get sharp pains. I don't have any rash as yet.
I have been in contact with chickenpox lately so didn't know if Id caught anything from that at.
I was thinking about PMR and although I am very nearly stable on 10 mg Prednisolone it is a knife edge dose. I still have many side effects from 4 years use of the steroid. In some kind of order they are:-
Muscle wastage, fatigue, lassitude, thinning of skin, easy bruising, cuts which take an unusually long time to heal, glaucoma, dry eye, exacerbated and premature cataracts which necessitated operations on both eyes to replace the lenses, virtual permanent stiffness and loss of motion in neck, constant shoulder and back pain, balance problems and now a recent discovery which I believe to be bronchiectasis. The last manifested itself with a slight productive cough I have had for about a year, with a shortness of breath which is steadily getting worse. Initial exam by GP showed no ‘crackle’, X-ray was ‘normal’ blood ‘normal’, whatever that is. Have seen this GP who gave me a course of amoxicillin (5 days) which did nothing. Then just left me to get on with things, no follow up, nothing. Not sure what to do next. I can see any one of the other doctors at this particular practice and am thinking to see one of them soon; well at least I can try for an appointment, currently 2 weeks!
Now the latest manifestation…..Shingles. Or to give it its proper title
Herpes Varicella-Zoster. A particularly painful affliction caused by the chicken pox I must have had as a child. It has affected the left side of my scalp, my left forehead, eye and face; I am not a pretty sight! By the time I knew what it was it was too late for any anti viral medication so will just have to let it take its course. Existing on Paracetamol, Codeine, Neurontin and the occasional Tramadol. All of these analgesics are for a short time only, don’t want to get hooked. Managed to see a doctor reasonably quickly about my eye who sent me to the eye unit at my local hospital, ophthalmologist examined the eye and gave me the all clear, phew!
On top of all this I have the daddy of all flares I put the cause of this down to the trauma of my new affliction. My immune system is compromised due to the daily use of 10mg. Prednisolone which I have increased to 15 mg. for a short time. It appears that any kind of trauma either emotional or physical will set off a flare.
I wondered what causes a flare in other sufferers from PMR/GCA and do they do as I do and increase the dosage of steroid and try to rest? Or is there a magical cure I should know about?
Long ramble I know but strangely feel better for writing it, apologies if you think I’m wasting your time, or a hypochondriac. (I’m not).
To my knowledge I have never had chicken pox. I have been taking Pred for three years and am now down to 3mgs from 15. My granddaughter is with me with chickenpox. Should I be worried please?
View 24 RepliesI was told years ago i haf fibromyalgia but now my blood work shows a high sed rate
View 31 RepliesBackground: I am 66 years old and have suffered first attack in mid November 2015... I have been fairly active person and have done some triathlon in the past, so not being able to get out of the bed on my own was pretty shocking to me... It took about one month to diagnose PMR and I started medication (prednisone) at 15 mg/day mid December.
If there is an interest, I would like to post about the progress in recovery, with special attention to exercise. I am seeing specialist every 2 weeks and complete blood work is done to monitor inflammation caused by PMR.
I would like to post what I have done thus far and future progress in (hopefully) successful recovery.
Has anyone tried Q10 supplements, and are they alright to take with pred.
View 33 RepliesI have recently had blood tests again and have a low esr. I have symptoms of pmr and discussed these with my gp. I begged her for prednisolone and she reluctantly agreed but only one week. I felt great! I was walking normally, getting out of bed for the whole day where I was bed bound a lot before, just felt so wonderful having so little pain in my hips and shoulders. My blood tests came back normal and she said she cant give me any more and is referring me to rheumatology again. The pain has come back, my hips are crippling me my shoulders are so so painful again and nothing else has worked, just the prednisolone. My orthopaedic specialist may give me one more injection in ten days, vpbut that will be the third and he said 3 is the max so I should have relief for 3 weeks, if previous injections are to go by but after that.
View 42 RepliesFor the last week or so, I have been getting short of breath, and very dizzy, feel like I am losing my balance, and my heart is racing. I have never had panic attacks, and this seem to start strangely enough when I have been reading....and then the weird feeling lasts the rest of the day.
Is it possible it`s the 11 mg pred I`m on? (have been for 4 years) Just can`t pin down what`s causing it! My blood pressure is ok....not diabetic...
I am wondering if gum inflammation is related at all to the PMR, GCA. I will see the dentist in a couple of days. Thanks.
View 6 RepliesDoes anyone know whether cannabinoids have been clinically studied for PMR? There has certainly been a study that shows they may be effective against the inflammation in other diseases. Google: cannabinoids and inflammation.
View 2 RepliesJust wondered if anyone on here has trouble with their Achilles Tendon? First thing after resting a while and if I've walked far too much they get very very stiff and painful! There doesn't seem much flexibility in either ankles. I didn't have problems with them when I was first diagnosed with PMR, only now 10 months into the condition and in 7 mg of pred!
View 7 RepliesI have been a regular migraine sufferer for 34 years, averaging about one per week. I've been on prednisolone 15mg for a few weeks now for PMR, and not the slightest hint of a migraine. Could it be down to the steroids? I'm not happy about taking them, but maybe every cloud does have a silver lining!
View 10 RepliesI have severe bruising on my arm. Whole right arm. Super ugly. I've been diagnosed with pmr for three years. Could be down to 5 mg. However, had major insect sting and hives and reaction. So, went back up to 40/20/10 mg prednisone for 12 days per Doctor. . Doctor gave me steroid shot, too. Please tell me that this new super dose of prednisone may have caused all this major bruising? If so, maybe can tolerate for a month or more?
I have had PMR since March. Today I feel like I have a fever and "hot flashes". Could this be a PMR "flare"...or just a coincidental illness.
View 9 RepliesCan anyone tell me if you have fainting feelings with GCA...
View 10 RepliesCan anyone tell me if its ok to drink alcohol while taking PREDNISOLONE.
I like a beer at the weekend or to share a bottle of wine, but, can't find any thing in the Prednisolone paperwork that suggests not drinking.