Good day to all and thank you for having this community. I am 56 yr old Pharmacist in the US diagnosed with GCA 3 years ago. I was in the same place that many of you have been with " hard to diagnose"and taking months to get answers A major issue that I was surprised to go through was the withdrawal I experienced from tapering my prednisone.The best way to get through the tapering off is to do it slowly. My doctor is very conservative and her tapering prescription was very, very slow. I was on prednisone for 18 months starting at 60mg and when I got down to 10 mg I wanted to see all the side effects disappear. The 30 lbs of added weight were killing me and I wanted my body to get back to normal again. When I got down to 5 mg the weight and my chipmunk cheeks started to go and my face looked like me again, but I was feeling so achy. I was stiff in the morning and I would get shooting pains in my thumb, or my toe , or worse my chest. I thought I was having a heart attack. These were all part of my body adjusting to the lower prednisone and trying to restart my adrenals. This part of the treatment was never discussed and when I first experienced a pain I thought my disease was becoming active again. In my head I thought well I am getting better, getting off the prednisone soon , I should be feeling better. I was actually feeling worse than I did prior to my diagnosis. This was so disappointing. I was getting depressed and thought to myself " Will I ever feel good again?". The funny thing , well not so funny but when you are in your 50's and a woman business person, everybody keeps reminding you that you are not "28 yr old" and you work too much, so that is why you don't feel good. Oh, and you must be "menopausal" to boot. All of those preconceived thoughts are the farthest from the reality of why you don't feel good. There will always be good and bad days and it does get better. I have better days now and I feel better every day. I do have hope and I have learned to listen to my body and take some time for me. It really does get better- honest, do not despair just be aware and every person will react differently to drugs.
New to community and living with GCA and off pred... - PMRGCAuk
New to community and living with GCA and off prednisone for 10 months but Prednisone withdrawal is real so take it slow.
Very helpful thank you
Hi yourpharmacist,
Sure many will relate to your account of GCA and the journey it takes you on.
Similarly, I've been off Pred now for 11 months. My journey was slightly longer than yours, undiagnosed for 18 months, unfortunately resulting in loss of sight in right eye, so started at 80mg. Long slow tapering followed with the usual suspect side effects, although certainly not as bad as some get?
I didn't have any flares - so totally agree - slow is good, better, best!
My adrenal were very slow in getting back on board, and as you say, just as you think you are nearing the end of your journey, everything suddenly becomes much more difficult, and like you, until it happened was not made aware of the problems that can cause. Fortunately I only suffered fatigue, but it did last the best part of a year, which did begin to worry me.
Some 4 years after diagnosis (so 5& half years after first symptoms) my body suddenly had a Eureka moment - I felt so much better in myself as if a weight had been lifted from me, and I knew (hoped) that my GCA had gone into remission. Not wishing to jeopardise things I continued with my slow taper to zero over the following 6 months.
Now I feel better than I've probably felt for the last 10 years, life is good, and getting better. If I could just get rid of the blasted osteoarthritis it would be nearly perfect.
Take care, and enjoy life.
Thank you, loss of sight- that is the big fear and you had that - my ophthalmologist argued with me about my diagnosis as he was on a webinar that said only people over 70 get this so no need to be concerned. Glad you are feeling better, thank you for your post very helpful.
Just well I wasn't on the webinair- who on earth was so ignorant as to not at least know the international rheumatology guidelines? Even they have said "over 50" for years now. The 70 figures is the AVERAGE age - so loads older means must also be loads younger. But medics were never very understanding of numbers...
Thank you so much for all your stories. I am very new and still trying to navigate this site. It is amazingly comforting to know there are others out there going through this. Very interesting to hear that there might be some relationship between shingles and PMR/GCA as I had shingles a few months before getting PMR/GCA. I think there might have been some sort of study done in the U.K. about the relationship. I live in the States, so I am not sure what the feelingis about that here.
Hi Stella,
There has been a certain amount of discussion regarding the shingles vaccine and PMR on this forum, and I believe the manufacturers of the vaccine have a comment in their paperwork stating the possibility of the vaccine triggering PMR.
If you type shingles and PMR or just shingles into the search box you may get some more info.
Interesting. I had the vaccine however at least 6 years ago, but the shingles just before getting PMR/GCA. Apparently at least 50 % of people who get the vaccine still get shingles. The latest shingles vaccine is much more effective. However I will check out the connection between shingles and PMR on the web and see what I come up with. Thanks so much for your reply.
A research group has claimed that the shingles virus can be found in a large proportion of TAB biopsy specimens - however, there are a lot of weaknesses in the study and really, almost all of our age group will have had chicken pox which is the same virus. It is also true that the data sheet for the shingles virus states that it can cause shingles itself - and PMR as an adverse event.
Great to hear from a fellow 50's GCA badge wearer who is out the other side. I'm only 4 and a half months in and this invalid thing is wearing thin but I've already forgotten what it's like to feel well. It's like the working, busy, fit person I was, was actually someone else, very bizarre.
Hang in there- the first part of the journey is acceptance- I could not believe that I was sick. I am used to helping other people and getting them better, I could not do anything for myself. The prednisone made me jittery and my mind felt like it was speeding and I wanted to do so many things but my body kept saying not so fast. I was anemic- which also caused the fatigue. I had severe inflammation of my aorta and had stomach issues with digestion due to the inflammation, so small meals was the better way to eat. I am not 100 % but I am better- and I am able to ride my horse and most important I am able to say to myself it is okay to rest. I even take naps once in awhile- I never took naps- ( afraid I was going to miss something) please let me know how I can help you- you are not alone.
Yes! I failed at the first part of the journey for a couple months...
A_c_c_e_p_t_a_n_c_e is indeed the key and if you do not master that step... you just keep tripping!
Hi, I've been following this forum for a while and found it unbelievably helpful and supportive but I haven't posted before.
I'm really interested in your comments about adrenals and lower doses of prednisone and wondered if you can give me any more pointers on this. I was diagnosed with pmr a year ago and although it has been a really difficult year for me (usual tale of very active beforehand, difficulty of getting a diagnosis, unhelpful 'advice' from many sides) I can see from the forum that in many ways I've been fortunate. I started last year on 20mg and by May this year I was down to 3mg and feeling ok. Then I got shingles and that knocked me sideways. I went up to 4mg (on my own decision not discussed with my GP until afterwards) and that seemed ok although it's taken me a couple of months to get over the fatigue of shingles. Two weeks ago I found I was in more pain and went up to 5mg. That has worked well for me - so well in fact that about a week ago for the first time in a year my knees didn't hurt and I had an insane moment when I thought I might be getting over pmr (then I remembered I was on 5mg and that it meant instead I might be on the right dose - that insight is definitely due to the many posts I've read from Dorsetlady and PMRPro - thank you). So basically I've bounced around 5, 4, 3 mg up and down for 4+ months and I wondered, how do I judge whether what I am feeling is the inflammation of pmr or my adrenal glands switching on. Judging from what you are saying it seems like it would be good for me to have a bit more endurance to put up with pain/fatigue from adrenal glands switching on - maybe a greater ability to put up with it? How do you judge these things?
At the moment my plan is to stay on 5mg for a while longer to be sure I have stabilised and then start again on the DSNS method (which I had been using before once I got to 6mg) and hope that the inflammation stays controlled. Any advice would be great.
The taper is so tricky and I am still amazed at how small of an amount of prednisone can make such a huge difference in the way your body responds. Your mention of shingles is another connection as the virus that causes shingles, chickenpox has been studied and there is suspicion that there is a connection. About 15 years ago I had a very mild dose of chicken pox and have always had herpes outbreaks on my lips. When I went into the hospital with GCA I had a huge outbreak in my nose, ugh, and on my upper lip. I would not say you need to endure pain as pain will send you into a stress reaction and will makes things worse. Since my diagnosis I feel like I am overthinking every crick, ouch, pain etc. because I am scared to death of having a stroke or blindness. What I realized about the withdrawal process is some of the pain I was experiencing was not my illness as it was the taper down effect. I know people that went to the ER due to the pain. The pain in my chest would take my breath away and would last 30 seconds or more. The other problem we have is if you get sick, cold, flu, shingles your body has to do double duty to address that assault so the whole process gets more complicated.
So your question of how do you judge these issues, pain, is the million dollar question. Your adrenal gland produces cortisol as you know and the dose where your adrenals start coming back to producing cortisol on their own could be 7.5mg , 5.0 mg, 6.0 mg depending on your body. If you add in a stressor event like shingles, your adrenals are super stressed to deal with making more cortisol to address the body needs. The adrenal cortex which produces cortisol needs cholesterol to get the job done, so adding fatty acids like omega's, and not following a low fat diet could also help your body. Cholesterol has been the focus for many years as the enemy and cause of cardiovascular events yet Cholesterol is the hormone that many other needed hormones are converted from. Our muscles, bone, brain all require cholesterol to function properly. I got very upset and depressed with the increased pain after stopping prednisone. I could barely lift my arms over my head to take my shirt off. Again not much sympathy from the crowd of "we all have pain, it is age" but it was not normal pain and I have to believe it was how my body dealt with the whole process.
I am assuming you are doing this taper with your doctor-? My doctor and I would have many conversations after I got blood work done to monitor my sed rate and C-reactive protein levels and to review my symptoms. We would decrease by 0.5mg and stay on that for 5 weeks then drop another 0.5mg, that is how slow it was. I also had to go back up to 5mg for a few days when I got sick. It is a real challenge, but slow is the way to go. Hope this is helpful.
Thanks for your response which is helpful and informative about adrenal glands. To be honest I have not had much interest from my doctor and have really been finding my way with the help of all the information and experience on this forum. I'm hopeful it will all work out in the end.
It it is rare to find a Doctor Who agrees with .5 reductions. You are lucky. I am curious where do you reside? I have a large post to make some I am keeping this short.
I live in NJ, Morris County- My Doctor is Dr. Laura Paxton, she is one of 4 woman in the rheumatologists group. Her associate is who saw me in the hospital and diagnosed via temporal artery biopsy.
NSJ1985,
My rheumatologist gave me advice that I have found helpful concerning whether pain I was experiencing was due to prednisone withdrawal, or my PMR/GCA was flaring. I take acetominophin (paracetamol in the UK) and see if the pain improves. If it's a flare, acetominophin won't help at all.
Thanks for that. Well, I've had to accept I'm ill, because I am not one of those who could go to work on Pred and I never got the energy people talk about, more like restlessness. My body doesn't let me do much at all but I walk daily. It was difficult at first because at the beginning, I walked in to A&E as Action Woman apart from head/eye symptoms and walked out poleaxed albeit pain free with my sight back. Afternoon naps are non-negotiable because I feel awful if I don't. Muscle weakness from Pred has really kicked in, so no chance of physically over doing it without kickback. I have accepted that my nursing career is over and my other main job will be soon. The hardest thing is watching my husband and teenage girls going out to get on with life while I am stuck at home with my live-in father-in-law who is the most negative, selfish soul ever.
Interesting about your aorta and stomach. I've had a tendency towards acid reflux for years and ectopic heart beats when exhausted, backed up by cardiologist opinon 15 years ago. This was especially bad in the 8 months leading up to GCA which I put down to being very tired from starting a demanding but enjoyable new job. In the final four weeks i sometimes woke with numb arms like I'd slept on them, which I was beginning to think was odd as you can't sleep on both at the same time. I had a PET scan which was clear but I had been on 60mg X1 then 40mg Pred for three weeks, so was not 100% reassured by the result showing no active inflammation. After about two months on Pred I was suddenly aware that I had no ectopics and my heart felt calm all the time. I had got so used to a subtly unhappy ticker that I didn't notice it was abnormal until it went. At first the Pred did horrible things to it and if I ate dark chocolate as well, I was in real trouble, but that has passed thankfully (for the choc!). I am wondering if I had more widespread disease because I had other tiny symptoms as as well like unusual hard skin on my toes on one foot for no reason that has gone and small arterioles in my fingers kept bursting which have stopped too. So, what did they do about your aorta? Just wait?
Your PET scan was a waste of time and money if you had already been on high dose pred for 3 weeks - it interferes even at 10mg.
I can identify with the hard skin on your toes, mine was also on the sole of feet - it is as much from the PMR making you stand and walk "wrong" as anything. My chiropodist has commented a couple of times on how my feet have improved - despite the foot misalignment I've had all my life not having changed. I remember somebody saying their rheumy reckoned they could dx patients with PMR by their feet!
Anyone with GCA should have checks for abdominal and thoracic aortic aneurysms. In the UK you can tag on to the over age 65 men's screening programme for abdominal:
nhs.uk/Conditions/abdominal...
My husband's department started that work off doing scans on every man who came into the vascular lab for whatever reason - seems a long time ago now!
Thoracic aneurysm isn't as simple - they usually suggest an x-ray but MRI or CT are obviously far better. Were it not for the queues...
I am so sad to hear that you are so weak and thinking of never doing what you love again. I know that the psychological effects of this disease are huge and depression just added to my challenge of remission. It was the scan of my pelvic and stomach area that showed the inflammation of my aorta in to my kidneys which caused the alarm to " you need to be admitted to the hospital". Crazy health professional that I am, I said I can"t get admitted, it is Friday and nothing gets done on the week-end and I have to work on Saturday. Lets talk about this on Monday. Talk about denial and stupid- So I dragged myself to work on that Saturday- ( I am a part owner and President of a long term care pharmacy, we were in business 3 years, still in the red and I had 1500 patients and 15 employees that I was responsible for and as a start up everybody works weekends.I was one big mess.) So Monday my husband brought me to the hospital and the story begins. I had a follow up cat scan done about 3 months later to see if any changes. I had some reduction of inflammation and had also had some thickness identified. I will get another cat scan sometime this year to make sure nothing has changed.
My first real symptom was I had a blocked ear feeling, and I kept smelling smoke, cigarette smoke, but I do not smoke and no smoking around me. I wen to a psychiatrist to see if I was losing my mind. I went to the ENT 3 times and there was nothin thereon wax and they just looked at me like I was nuts with the "smoke smelling" statement. Then my teeth felt like I could pull them out , they were moveable and very sensitive. Then I had gotten a bad upper respiratory with a cough that you would think I was coughing up a lung. Terrible night sweats and unpleasant odor to my sweat. Cardiologist told me I was overworked and tired from the holidays. The Pulmonologist told me I had post nasal drip and menopausal ( night sweats). Nobody took any blood work. THEN my integrative primary doctor had blood work, cat scan due to my family members with cancer and that was the beginning of getting better.My fatigue was result of anemia from the inflammation issue. I have been on thyroid medication for at least 10 years but prior to getting that figured out I had anxiety attacks and heart palpitations, hormones played a roles well but because my TSH was always in normal range, no one wanted to put me on medication. I had all the symptoms but my labs were in range. That is another huge discussion.
Sorry for the long winded answer but it helps to explain how I am being handled. My doctor relies on my symptoms and is not reactionary to my labs but she is very responsive to my calls and is very conservative.
I have smelled smoke for at least 15 years - sorry, Im very excited someone else has experienced this! Been to ENT, rheumy, allergist AND Psychiatrist - NO ONE has given me an answer. Seems to appear before I get sick or if I am fatigued.
I was diagnosed with PMR almost 2 years ago - been on prednisone from 30mg to currently 10mg and they are trying to taper me off. Two weeks ago rheumy said he is not sure it is PMR. What the heck? No response to what it could be. For the last 3 weeks, cannot walk well - left leg, toes, knee and behind knee is very painful and weak. They have done mri's, X-rays and dobbler and cannot find a cause. Since tapering, have had muscle fatigue and just plain tired. We are scheduled to fly to Eastern Europe end of August (already rescheduled from April) and afraid I won't keep up with group. Had a good day the other day and have been paying since, Age 62, also in US (Atlanta). Only other med is zyrtec. Weight gain of 60lbs. Ridiculous!
This was the first time I have met a person with the smoke issue! Do you still have it?
wow, you are the only person who ever talked about this too. I recently experienced the smoke smell again and it coincided with a bout of getting sick, very high fever, sore throat and fatigue. Another weird issue is I drive a diesel vw and I had been complaining of a bad smell that would take my breath away when driving- it turned out that the filters were so filthy that I was breathing in this circulated dirty air from the engine. (again a trust issue when you bring your car in for oil and filter changes-now). So what came first, was it this bad air that caused a huge infection in my sinus that never got corrected and then the tsunami from stress, death of parent, flu to attack on my vascular and my family has history of RA? The genetic and environmental triggers must play a definite role as many studies are pointing to.
If you google smell smoke and no-one smoking, it can really upset you as of course there is no real answer just possibilities of infection, tumor, etc.
My ear feeling clogged has also not resolved, it just does not appear as annoying all the time.
I have also had many more herpes outbreaks since my diagnosis and then I go on zovirax for a week to resolve.(All under the direction of my doctor.)
ENT put tubes in my ears, did a hearing test having now lost partial hearing in left ear (thistle tube just fell out). Can't say if they helped or not. Left ear feels blocked.
Yes, I've seen the smoke & tumor googles. Seems everything started after shingles vaccine and reaction to levoquin - have an attorney looking at shingles vaccine which lists pmr as side effect.
Interesting! smelled smoke about twice in the run up to GCA year but that was it. I thought it was a brain tumour but then it didn't come back so I got off that bandwagon and forgot about it.
Regarding career, both my jobs are/were demanding; there are no half measures. Therefore, it is probably not sensible to go back because I've learned on number of occasions that once I know a job is too much, it is too late. With GCA that's drastic and I don't want to be there again. There seems to be very little warning to me other than signs that one thinks a few good night's sleep will fix. Yes, when it doesn't go after a few good nights, I put it down to other factors going on and there have bucket loads. Trouble is, I can't keep taking time off for R&R every time is think my body is showing signs of over doing it, or I start getting a cluster of trivial and seemingly unconnected physical signs. I will be forever, paranoid like I was after my cancer 13 years ago.
Anyway, I got this same loss of confidence in my body back then. I know that in time I'll get used to how the new one operates and find some sort of niche somewhere, but it is too early to tell what that is. If it pays a salary too I'll be very happy! Meanwhile I have to let go of the old career and identity that went with it and that is a challenge because it disappeared over night, so I had no time to prepare myself.
Thank you for sharing as it helps me understand myself and know that I am not alone too. Adding cancer to the list also , wow, alot to deal with. I understand how you feel and it has taken me 2 years to admit I really am sick. Saying no to others and yes to myself is very challenging to me but my body "screams" no and I am finally listening. This is a slow go but so great to have so much support on this forum.
thank you
So interesting to read your posts. Do you have PMR too or just GCA? I so far only have PMR or that's what I'm told. My GP and my rheumatologist think it is PMR because I have responded to the steroids. I'm tapering slowly after a horrible flare last year which came about through lack of support and awareness of what i was dealing with. Hadn't found this wonderful site at that time. I have been well other than my aches and haven't picked up any bugs, colds etc from family or friends even though I'm immune suppressed which has always surprised me. The only thing that continually breaks out is my herpes, every few weeks. when I do mention this to my GP he says its because I have a suppressed immune system etc. Why do I not pick up every other bug my family bring home? I still believe there is a link between the Epstein Barr virus which I continually test highly positive for. I appreciate many of us do as it is a common virus. I have read some articles about a link with the EBV but nothing conclusive and neither my GP or Rheumy are interested in trying an anti viral to see if it suppresses anything else my body might be struggling with. They are more keen to try steroid sparing drugs to get me on a lower dose of prednisolone and in my opinion (mainly obtained from this site!) they have no guaranteed success either and some seem to have not great side effects. I'm not sure that a course of anti virals would do me any harm but its not easy to get hold of them (I'm in UK) and I would prefer if my GP supported me. I feel most of my current issues - weight lying around unwanted places, moon face, higher ocular pressure, higher cholesterol, racing heart at times - are due to the pred as opposed to the PMR, but who knows!
I have just been lying low, staying away from my GP, getting monthly bloods at Rheumatologists request, and continuing my slow tapering, and reading all the great posts here to keep me going.
My atrial fibrillation is/was due to the PMR - or at least the autoimmune part having damaged the electrical cells in the heart wall. So well worth getting it checked if you can.
Welll i am so thrilled with this community outreach. I have been officially diagnosed with gca via the temppral artery biopsy. I have wondered if i also have pmr but so far my doc says no. I am so surprised in reading these posts that the docs conclude pmr diagnose because the prednisone gives positive response. Prednisone will make anyone feel good just by the nature of this drug!!!! I have been prescribed zovirax when i have a break out and free m the literature i have read there seems to be a connection
I believe if it does no harm it is worth the try.
The problem with these diseases is we dont know so everything is a guess.
I hope you find a doctor that will work with you.
If i can help you please let me know.
Thanks for your words. I'm in UK and it seems if there is established treatment protocol that's that. You follow it and hope for the best. If you are out of the normal category - and there appears plenty of us here! - then it's harder to deviate. Don't know where to find a GP or rheumy that have depth of PMR knowledge and who may support a viral link.
Will keep looking, asking and hopefully tapering!
"Prednisone will make anyone feel good just by the nature of this drug!!!!"
No it doesn't - and there are a lot of people on the forums who will back me up!
The doctors don't assume on the basis of just the response to pred - they do it as a differential diagnosis and a clinical decision on the basis of symptoms, blood markers (in 80% of cases) AND response to pred. You can have all the symptoms and it NOT respond to pred - that would suggest fibromyalgia perhaps. Other things that look similar might respond a bit to pred - LORA for example.
But no - pred on its own does NOT always make people feel better. It often makes them feel pretty ropey.
I can appreciate your response- the challenge has been that a number of patients that I have been working with and some of the docs have just prescribed prednisone from symptoms, not even lab work or explored other possible reasons-like lymes disease and start them on 10mg dose and the pain subsides and then tells them yup you have PMR. I think that is cruel to not try to look at all possiblities.My point of prednisone making you feel good is it will 9 times out of ten will handle a pain associated with inflammation, but you will feel out of sorts, jittery, not yourself- but the pain is lessened. We are battling a group of diseases that since we do not know what exactly caused the disease it is hard to know the best way to cure it or get to an inactive state.
I agree PMRpro
The suggestion that (sic) 'you will feel better' on Pred is an entirely subjective one, and (in my experience at least) should be considered in the context of being a 'trade-off' between one set of symptoms and another. The 'least worst' scenario - and, again, in context?
My temporary GP (young-ish, female - as if that's relevant) said this to me recently, implying that (q) 'You are bound to feel GOOD on the Preds, so don't become dependent on them and get-off of them asap! So, reduce from 5mgpd to Zero in 8 weeks'. My response: 'Oh, really...?!'
A letter to the GP Practice Manager explaining what I know about PMR symptoms and Pred tapering (from what I've learned here), with a request to challenge this GP's opinion, was met with a very conciliatory response: and an agreement by a senior GP for me to manage my own steroid tapering regimen according to my symptoms as time goes on.
Enough said...?! 
MB 
Well I'm on more than you - and I wouldn't say I felt GOOD! What a silly young woman - hope the designated flak-catcher GP in the practice told her about reality!
This was the GP who emphatically told me: "I get ALL my PMR patients off steroids within 2 years". But she didn't mention how many of her patients have relapses and need to go back on them. I wonder why..?! 
Or, more likely, go to a different doctor! She obviously has a god-complex - and a wide body-swerve sounds called for!
I too smell smoke at times and no one else does - I was diagnosed with PMR and interestingly had the Shingles vaccine in 2014. I hopefully do not have GCA as no symptoms up to this date and have had a negative TAB because I do have double vision at times due to 6th nerve palsy - cause unknown. On doing some research about smoke smell I came across an interesting article from 1988 about 2 ladies, one who lost her sense of taste and then it returned a year later and a while after that she was diagnosed with GCA and the other lady had a smoke-like smell and about 3 months later she was diagnosed with CGA. The article concludes with a comment that it remains to be seen if olfactory involvement is an overlooked feature of GCA? interesting to see how many others smell smoke or similar problem and then go on to develop GCA
There has been a study ongoing about ear involvement in GCA - if the blood flow to the jaw is compromised you really would expect the blood flow to the ears to be less than perfect. There are some much older articles about GCA that mentioned ear involvement - but they seem to have got lost in the mists of time. But in my experience that is something that is happening a lot in medical science these days - if a paper isn't listed on digital search machines it often isn't found and the wheel gets reinvented. Usually badly...
Always good to hear from someone who has " come out from the other side" Gives us all hope and encouragement when the road to recovery seems quite long at times and added to that is the lack of understanding from medical staff. But onwards and upwards..... these times will pass.
Oh, what you say!! Yes, we all get it!! You have packed a graduate course into your post, about prednisone withdrawal !
No one told me what withdrawal would be like, info is so sketchy...with most focusing on the "horrors" of prednisone, not the rest.
This forum has been the source of most (all) of my knowledge, and thanks to you, that knowledge continues to expand. 🌹
Regards, Jerri (from Bellingham Wa, USA)
Thank you Jeri that is my goal to help and make use my education and own experience to lessen the pain or uncertainty dealing with this disease.I am not giving in to it....
Thank you all for the support!!!
I was very interested to read your post. I was diagnosed with PMR and GCA last summer (July ‘17), after quite a while of wondering why I had those awful headaches, double vision etc. Fortunately a friend who is an internist suggested I might have GCA so I had the temporal biopsies. I started on 60mg Prednisone and felt rather manic! Now I am down to 8mg and am feeling really nervous, going down l mg a month. My hair is coming out, which apparently can be due to the diagnosis....hopefully that will stop soon. (Did you get that?). It started about 4 months after being diagnosed.
I am so interested to read other people’s experience with these two autoimmune diseases. Thanks
Hello im so sorry to hear you have that this too.
The key is slow slow taper when you get below 10 you r at 8 might get to 5 1mg down every 4 weeks.
Then down by 1/2 tablet.
I have a thyoid issue that went haywire with diagnosis so once i got back on track my hair stopped falling out in clumps
I also had alot pain in muscless stiffness wich is a sideeffrct of prednisne withdrawL.
I take vit d 5000 5 capsules every three days and that has helped .
I know have terrible itchy issues hopeing it is not vascular will see.
When i got down to 5 mg i had to go up to 6 for a few days and then back down.
I also was given bactrim to take prophylactically to prevent getting sick,
My doctor is great and I am always pushing the envelope with my theories etc.please keep me posted and you cam pm on facebook- linda witzal
Hi Linda, thanks so much for your response. It is encouraging to hear that you are on 5mg prednisone now....I get so excited every time I decrease! Next week it will be 7mg..(for a month) .yes I am taking vitamin D also and also calcium as I have osteoporosis and had Reclast last July. I seem to have gone from taking no pills to taking lots (which as I am sure you feel too is rather a shock). Also a baby aspirin. guess all Rheumatologist have different approaches.
I have heard that thyroid medicine can make your hair fall out. I am glad that has stopped for you. I find it really upsetting! Though I know there are worse things...
Keep me posted on your prednisone decrease and thanks so much for your advice.
Stella,
I am off prednisone and have been since nov2017.sorry if Iwas not clear but it took about 18 months.
I also was on baby aspirin and i still take.
I was so excited too with every decrease.
I am not a fan of the osteoporosis meds due to their side effects.
I am stRting to lift weights exercise more and i take the supplements. It is a natural progression of aging to loose bone mass and that is why weight bearing exercise is good as that is only way of really strengthening bone thr muscle building.
Did you know that Harold Remis- Ghostbuster actor and writer died of complications of GCA? His daughter has written a book about him, i have been in contact via facebook and hope to do a podcast interview with her.
I am tryingbto get the word out thu my website.
Thanks for your reply...so glad you are off prednisone, you must h ave been so happy to get off it! I am not a fan of osteoporosis meds either, but I was told that steroids can do a lot of damage, so that is why I had an infusion of Reclast. I have a question for you though, when you got down to 8mg (or around that amount) of prednisone, did you feel depressed at all? I have suddenly started to feel “down” and very sensitive to things...not sure what is going on. I keep hoping this will go away and am wondering if it is due to lowering the dose.
I did not hear about Harold Remis dying of complications of GCA. I would like to hear your podcast.
Stella,
I will say that the body has to work really hard at fighting off the attack, then prednisone comes in and pretty much takes care of the inflammation and then when you lower your dose your body has to adjust. I had such severe fatigue and pain in my MUSCLES, not joints, I could not even take my shirt off over my head, and I had no strength. Then out of the blue I would get a pain in my thumb joint, stabbing pain. So weird. When you tell the doctors sometimes they say "oh that could not happen" well it can and it does. My niece's husband was admitted to the ER for excrutiating pain in his back when he was coming off of prednisone. The Down Feeling is real too- remember prednisone gives a false sense of wellbeing, so as you come down on dose you will feel depressed. Depression is real and dealing with being "sick" and not feeling well when you have never been sick is depressing.
I can tell you I felt like that and I feel better today. It does get better, but take it slow. I was not a person who would take a nap or only do 3 things for the day, I had a list of 20 items to complete. My biggest adjustment was to accept that I did not have the energy, I needed to slow down a bit and I would get back to my old self, but it will take time. I am 1 yr and 4 months off prednisone- and finally starting to lose weight I gained- I am doing it with south beach and discipline and it is working.
I just put my website up and my podcast will be next. I hope Violet will let me interview her-If I can get the word out to as many people as possible, my getting this disease will be worth it. I use to counsel a patient that had RSD, which is another really horrible diseases. Your body is in a constant "stress cycle" and the nerve endings are always on fire. SO you can imagine how painful. I was asked to compound a prescription , it was an injection, and she had to have it administered in the hospital. The medicine would change the polarization at the nerve cell level and it would give her about 3.5 weeks of no pain and then she would need another injection. It seems that there are many people who deal with this and one theory is that if you have had a car accident and the "pain cycle"was not recognized and treated properly you ended up with this. This patient went on to educate doctors in the hospitals and that was an amazing way for her to deal with it and try to help others. My take away for you is , you will feel better, and you are very sensitive because you are being very vigilant about how you are feeling. At least I know that is how I was and maybe that is the reason you are feeling extra sensitive. I also got funky looking red bumps on my legs so I took a picture and showed to the doctor- really no explanation. I am documenting everything.
Keep me posted and please don't worry you will feel better, take it slow.
Thank you so much, really appreciate your replying. Doctors know some stuff but not everything it seems!
Dear your pharmacist, A very helpful post, thank you so very much for sharing this! I too suffered from tapering plan that was way too aggressive. I started at 60mg and was reducing 5mg every 10 days; until I hit 45 mg, when I "crashed and burned." I had to be put on 80 mg to get the same relief I had been getting at 60mg. Every time I reduced I felt horrible for 5-7 days!!!! I actually felt worst than I had from the original GCA/PMR symptoms and by the time I felt "semi-okay," it was time to reduce again. Vicious cycle. I am now 140 days from my diagnoses and only down to 50 mg a day... reducing 5 mg every 30 days. I look forward to the days of 8, 7, 6 mg, but realise (from stories like yours) that that may not be the end of my problems... I still cant wait!!!! : ) Many thanks!
This is such a challenging disease. Hang in and you will get to your goal, dont stress about it because that will affect your progress. I recently saw my doctor and my blood work showed increase in my sed rate from previous lab but thank God we are going to monitor and we r not jumping back on the prednisone.
I am dealing with a hip bursitis issue , never had this before so in agony.
If you have any questions or need to vent feel free. We are all with you.
Many thanks! I don’t have a lot of experience with these diseases, or academic knowledge, for that matter, but I am personally in touch with the physical, mental and emotional impacts that they present. If you're interested I have written a blog since I was first diagnosed... Most of the posts seem to have resonated with a lot of PMR/GCA sufferers, I hope you enjoy... rantingsofamadwomanblog.com...
I love your blog fabulous and love the pics
I have written a blog as you did after my diagnosis to help get the word out autoimmunitycommunity.com and since my postings i have found so many people are dealing with these diseases and it really helps to have support from communities like this.
Confirmed hip bursitis, cortisone inj and physical therapy 3x week for 4 weeks.
Another thing to deal with, grrrrrr
I had bilateral steroid shots a couple of weeks ago for trochanteric bursitis, it has always been part of the PMR. No physio for that - when it's the PMR it's the anti-inflammatory you need, not exercises which actually aggravate mine. Hope it works as well as mine did.
wow- both hips, ugh-i have never experienced such pain- interesting that it has been part of pmr , i wonder since it is both hips it meets the criteria for pmr?- this is all so exhausting, i start physical therapy on monday and the injection has not kicked in yet- takes about 3-4 days to feel the positive effect,
THANK YOU FOR THE INFOR , looking forward to working without pain.
I have GCA/PMR and the Trocanteric (spelling) Bursitis in both hips is bad. The steroid injections helped me a lot and stretching seems to help me also. Yes it is "another thing" to deal with but you can do this. You are never bored when you have this disease, it always has something new. Good luck and stay positive.
Enan
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