PredniSONE Giant Cell Arteritis, Polymyalgia Rheumatica, Stomach Problems, Temporal Arteritis, Muscle Weakness
Posted over a year ago
In January I was diagnosed with polymyalgia rheumatica and temporal arteritis (giant cell arteritis). I was put on 60 mg prednisone and an array of other meds to help with pain, inflammation, water retention, and stomach problems from everything. I've lost some vision from the TA. I've experienced the weight gain, the moon face, stomach problems, depression, fatigue, muscle weakness, lack of memory and concentration, and generally feel miserable. The brain fog is awful! I don't trust myself doing much of anything these days! ... more »
In January I was diagnosed with polymyalgia rheumatica and temporal arteritis (giant cell arteritis). I was put on 60 mg prednisone and an array of other meds to help with pain, inflammation, water retention, and stomach problems from everything. I've lost some vision from the TA. I've experienced the weight gain, the moon face, stomach problems, depression, fatigue, muscle weakness, lack of memory and concentration, and generally feel miserable. The brain fog is awful! I don't trust myself doing much of anything these days!
When I was first put on the prednisone it completely took away all my TA and PMR symptoms. I could walk and get up and down again, didn't have the headaches, and didn't hurt all over.
My doctor tried to taper my dosage about 6 weeks ago and all my symptoms returned and increased as I went down on the prednisone. He upped me back to 60. That time the symptoms didn't go away. They lessened but were still there.
He's trying to taper again, and I'm down to 30 mg now and feel worse and worse. My sed rate has been normal, so the doctor thinks it's from the prednisone. Does it mimic all the TA and PMR symptoms? I also am having a lot of hand and feet cramping.
Does anyone else have these two illnesses? I would be interested in your experience. I want off these meds! Anyone found an alternative approach that's helped?
God bless!
Jillpo - Hi - I have PMR and GCA too. I'm on 60 mg prednisone too and am experiencing the same prednisone side effects as you. I have had 2 relapses when the Dr has tried to taper the prednisone down. Each time the symptoms returned more severe and required even higher doses of prednisone.
I have frequent prednisone crashes - very fatigued - brain fog - weak and shaking - emotional.
I will be going to Mayo Clinic soon to see what else can be done. In the short term - I am going to try to reduce my carbohydrates, sugar, salt, and caffeine and try more exercise and meditation.
I'll post again of Mayo has some answers.
Best wishes
Momr - My PRM, thankfully no GCA problems, was diagnosed Dec. 2005 and I am still on Prednisone. My SED rate and meds levels were never as high as your but the symptoms you described are the same. My weight gain is mostly above my waist..sort of a mini-pregnancy look. The hot flashes are tapering down thankfully since I am 72 years old and had that long behind me. I find anxiety to be one of the worst symptoms, it's hard to worry when you can't remember what it is that is worrying you. You are the first to mention feet cramping, my toes turn under painfully and my doctor looked at me like " that one is not my problem". Also developed a hammer-toe and wonder if that is related, SINCE EVERYTHING ELSE I EXPERIENCE SEEMS TO BE PREDNISONE RELATED!
I am having less problems with tapering down since he changed me to generic MethylPREDNISolone .
inoeaux
Barbiec1953 - I am being tested for PMR as we speak . I have two hammer toes and
I used to have terrible cramps in my calves and feet until I started
taking magnesium, potassium and using celic sea salt (the kind of salt that still contains the minerals) instead of the white table salt. I bought
Ionic Fizz Magnesium Plus powder and Natural Calm unflavored and mixed the two together because although I like the taste of Ionic fizz it can be too strong for my taste at the recommended dosage level. I put it in my water and drink it all day long. I also take PERQUE magnesium with my supplements. Magnesium will loosen you stools so go slowly at first. Stay at the level just before diarreah. It's great to have such a visual indicator that I am taking enough. I no longer get cramps( I don't even know if I want to call them cramps because they are so incredibly painful and I get would get the same thing of the toes curling under as you do...YIKES) unless I have had too much wine or eat sugar at all (as liquor can have a diuretic action and waste my magnesium levels ) and the sugar is pro inflammatory (it depletes your B vitamin levels and my pain levels shoot through the roof !) You bring up a very interesting point theorizing that the hammer toes are being caused by the prednisone. I am remembering that too much cortisol coursing through the body makes your ligaments like old rubber bands (dry and unable to stretch and constrict as they do when they are healthy.) When the ligaments don't do their job , then the muscles try to take over, which is great in an emergency, but not long term. Then the muscles get tired and sore and we don't walk and stretch as we normally would because of the pain levels. Then the muscle constricts and "hardens" into a low mobility mode and voila those muscles also pull in the toes and they curl under. It doesn't help that most of us also don't wear the right size shoes (length and width). I found out my shoe size is 10 wide when I was wearing 9B. Think about that ! So I was encouraging the toes to curl under even more ! I got orthotics and I also purchased an item called Yoga Toes which helps your feet become more flexible. Do not be afraid. They will not make your feet wider ! I also massage my feet every day. Get yourself a relexology book or chart. My Gentle Yoga teacher is the one who taught and encouraged us to massage our feet. She would tell us what part of the foot relates to what as we massaged our feet. One day I came to class with a terrible headache and clogged sinuses. When we came to the part of the feet that relates to the sinuses I didn't think much about it because quite frankly massaging you feet feels quite good ! All of the sudden my sinuses became unclogged ! Also, the inabilty of my body to hold onto magnesium may be a contributer. Magnesium is a muscle smoother/relaxer. Think about these things I have shared with you and hopefully something might help you on your road to recovery. Yesterday at the doctors I told him that I felt like Rigor Mortis was setting in because of the terrible stiffness I experience. We need to keep moving gently or our range of motion might decrease permanently ! YIKES !!! Scary ! My best to you and may God help us all in this trial. BarbieC1953
Barbiec1953 - I am thinking of doing a three week cleansing diet as outlined on
www.westoaprice.org in an article by Dr Tom Cowan. I have
heard before that resting the digestive system lowers pain levels.
This is a perfect time of year, summertime, when we are flush with
fresh, organic produce which is called for in his protocol. I am
thankful for the internet so that we can talk to one another and
encourage one another. We can be like the blind men feeling
parts of the elephant and together try to piece together the
"whole picture. Hopefully we can share things that have
worked and not worked for us as we pursue finding out the
underlying reason for why our emergency switch has gotten
stuck on start. I am so thankful for medications that can be
the stopgap measure as we explore other options that don't
have the side effects of prolonged use. It would be nice if we
could go back to our pre PMR selves but we may not...just
like my back and neck will never be the same after having
whiplash after my car accident...but by the same token I
am also no longer in the acute pain I was right after the
accident either. Thanks for listening and I look forward to
us helping one another ! BarbieC1953
Wilsclan - Dr. Tom Cowan in San Francisco is a very good alternative medecine doc who says that much of his practice is in helping people get off of prednisone and other synthetic corticosteroids. You could call him. He has helped my husband. We are down to 3 and 1/2 milligrams per day but he is still losing muscle mass and weight. I guess with this drug you either gain or less often, you can't stop losing weight. My heart goes out to every one who trusts doctors to know what they are doing and not hurt them. I remember that the first part of the oath that new doctors take is "first, do no harm." Synthetic hormones are good for the drug companies but ARE NOT GOOD FOR HUMAN BODIES. When will we learn to trust the Creator more than drug reps.
Pamc - I was diagnosed with polymyalgia rheumatica and temporal arteritis (giant cell arteritis) Sept. 2006, I was put on 60 mg prednisone. I've experienced the same weight gain, the moon face and also felt generally feel miserable. i was on 5mg the last few months and my symptoms (headaches/soreness to tempal area, some general back pain came back (after a year). blood work, SED rate was 61 and c-reactive protien 138.1 was very high. it's very common to have replases. my dr wants me to start Methotrexate. still debating on it. has anybody started useing this drug for giant cell?
Ethansnanny - Hi - I have Pmr and Fibromyalgia - my Doctor (and past Dr.'s) say I am a complicated case! This started in 1999, so I have had it for quite a while. My first experience, I was on 60mg. prednisone for 1 month, 40 for 1 month, 20 for 1 month and 10 mg. for 3 months. I was also on 200mg. of Celebrex and still continue with it. My sed rate went down and I had 1 year of remission. Since then, I have had several long lasting flare-ups, going back on prednisone. This last flare-up started in August, 2007 and I am still fighting it. I have also had several C-Reactive Protein tests run and my level has been around 52, which is high.PMR is something that is
different for every individual case without rhyme nor reason. My advise is stay on prednisone as long as it takes to reduce your Sed rate and get a C-Reactive protein test run to see where you are with that. This is a very irritating problem and you have my sympathy. I am seeing another Rheumatologist in KC,MO in April, but I really don't expect any new miracle drug. I also take: paxil and cymbalta for depression (cymbalta also helps pain) with good results, along with generic Vicodin and this really helps on bad days. I do not take Vicodin unless it is a BAD day. I hope this may help you. Hang in there and give yourself time to heal. Somedays I can't get up off the couch and I know you must experience this also. E-mail me if you wish and Good Health to you.
Bcangemi - I, too, have GCA and PMR. Have been prednisone for almost 3 years. Every time I try to come down, I relapse. Currently am on 10mg daily pluse 10mg Methotrexate. Would like to compare my case with yours.
bcangemi@aol.com
Mle_starr - I was diagnosed with PMR in November. 20 mg. of prednisone took away my symptoms. I am on 9mg now. I am experiencing severe foot cramps and hand cramps. I am also experiencing PMR muscle pain in my legs. It is not as bad as when it first happened. I am also having acupunture and taking chinese herbs. The cramps are excruciating and zap my energy. It doesn't always happen everyday.
Twofww - I was diagnosed with PMR in August and was put on 15mg of Prednisone. I had terrible pain in my legs and hips.
The 15mg dose helped immediately and I felt great. I was doing really well until my dr had me try to reduce the dose. As I've reduced it (15 to 12 1/2 to 10/day) the pain is trying to come back. Not nearly as bad, I can still walk up/down stairs and sit/stand without terrible pain but my muscles feel tired and achy. My most recent problem has been hand and foot cramps. Sometimes it's a real cramping but mostly there is a constant ache in the arch of my foot and in the middle of my hand.
My dr has also had me taking lots of vitamins (multi-vit, calcium, magnesium, fish oil, vitamin D). He said he didn't think the cramps are related to the PMR and maybe I'm taking too much Vitamin D but since I"m getting the PRM symtoms back I could go back on the Prednisone 15mg/day.
I worked so hard to get to 10mg/day that I hate to go back on 15. I saw that a few years ago several people noted PMR, Prednisone and hand and feet cramps.
Can anyone give me an update as to what helped with the cramps?
Kathericr - Hi,
I too have suffered from PMR and have been on predisone for nearly three yrs.Twice I have been able to reduce the predisone to 5 mgs and then I get a flare up of PMR again.In Sept 2009,I flared again and went on 20 mgs,and now I'm down to 10 mgs with another flare up.My blood pressure is increasing and I'm very concerned for my health.I want off this medication and would like some positive solutions.It is unfortuneate that I also have spinal stenosis,and osteoarthritis to add to the problem.However when the PMR kicked in,it changed my life.Oh,and the cramps,they are horrific.I have them in both hands,feet and legs.The cramps at my ankles and down into my feet are the worst,I think.Sometimes it's nice to know your not alone,but really,I don't wish this on anyone.
Fdn - I was also diagnosed with PMR and thought I had Temporal Arthritis. I had a biopsy performed and thank God ...the results were negative. I do have degenatrive arthritis in my neck and shoulders and the arthritis that i have affects my musles. They spasm and I can't feel the spasms. I am in pain. My body feels worn out. I am tired all the time. I was prescribed Prednisone and have been on it since october 2009. They started me with 40 mg. I was also prescribed Relafen, Soma a muscle relaxer and Percusset. The first week i was a mess. I cried and was depressed. I called my doctor and he lowered the pred to 20 mg.and the relafen to twice a day. My primary doctor said i couldn't do that because I am also a Diabetic....which is controlled.....type 2....so i was prescribed Azorzaphrine. I have trouble sleeping......i need to take clonazapam and lunesta....which didn't help....so i take the soma(muscle relaxer, the clonazapam, and the percusset to make me sleep. This gets me dizzy and knocks me out...which is good. I gained 25 pounds from Oct. thru January.....I have the moonface........i have rashes...i itch......and i have good days and bad days....the bad days i am inmobile...i feel weak, tired, sore and get headaches. I begged my doctor to get me off the pred. And am doing so gradually....I am at 8 mg per day. I have been to ER twice. The first time with a severe kidney infection. I have constant vaginnitis and uti's, diarrhea. So I need to take a pro-biotic, because the anti-biotics were causing the diarrhea. I take Align and it works. I need to watch when and where i eat...because i get sick after the meals.....and no i have not lost weight. The moonface seems to be toning down...but the person in the mirror is not me. I hurt more now with the 8mg. but God will somehow find a solution.....i refuse to start the prednisone again. I also was not aware of the side effects. The depression is the worst i think...besides the body aches. I find myself out of breath walking for approx. a block....out of breath and my legs hurting. I refuse to take antibiotics and have had a bought with bronchittis...which i really thought had turned into a pneamonia..and i survied. Also the UTI's which i was told were caused by the prednisone are a constant worry so it's cranberry juice, water or AZO cranberry pills. If i have another bout with a UTI or kidney pain/infection i will need to see a urologist....so i am waiting. My next appointment is with a neurologist so see about neve damage on my neck, shoulders and arms. I am currently at home...have been out of work since Sept. of 2008 and on Unimployment Benefits. I am wondering if i will be able to go to work.......since some days are just awful. I am 51, married with 4 children and 1 grandchild. It has been very hard for me and i have noticed that the lower the mg of prednisone i take the more i notice my condition. All i can do is wait and see...but i do feel worse and want to really be sure i can hack it without the prednisone. I am also wondering when the moonface will go away....and how long it will take. It is 3:57 am....and look at me ......awake and feeling nauseous and my body is hurting. if you have any questions please feel free to ask....the more info i have.....the better........this is the first time i do this kind of posting.
FDN-SOUTHERN CA.
Deblthomas - if anyone would like to chat ---- please email me at deblthomas@yahoo.com. my 79 year old mother has gca and now i am thinking the pmr as well - - - she started out on 60 prednisone and is down to 10 - up again to 12 - - hurts all the time - - - no energy - brain fog - - - aches and pains all over. i would love to find someone to discuss all this with ......tks..deb
Rlu - I was just dx with temporal arteritis and polymyalgia rheumatica. It has been a long expensive confusing journey to get this dx. So many different sx going on at once confused everyone. I also have resolving pericarditis with effusion and pleural effusion, and have have at least 3 UTI's in the last 2 months. Somehow when I went to the ED las week with severe vertigo, shaking, spiking BP the ED Dr guessed temporal arterits with my recent sed rate over 100, fuo, joint pains, night sweats, leg cramps, malaise,h/a etc. He started me on prednisone 80. I am tapered to 40 qd now. I still have some vertigo and palpitations but no fevers, no joint pain, and my psoriasis has even subsided. My question is why the vertigo and palpitations? My physician does not think this is related to my heart or vasculitis. I am not convinced. The last CT I had of my abd stated I had "moderately severe cardiomegaly" this was blown off too as insignificant. Has anyone else c/o of these additional sx? Are you all able to work fulltime in a stressful job? I would like to know what's down the road.....
Thanks
Bny - bny- I have read all of your testimonials and my heart goes out to each and everyone of you. I'm hopeful that someone out there can give me some insight. We have been told by our step-dad that our mother has GCA. However, a biopsy was never performed by the dr. ordering it. It was determined by another dr. that she didn't have it. We don't know what brought him to these conclusions. Step-dad is now telling us that he thinks that she has had this since before 2008. That it has been missed or mistreated by all the dr's. they have seen. He says that prednisone administered was either too short of time period or wrong dose. I should mention that she has had a seizure lasting 20 minutes and was prescribed Keppra 250mg am/ 500mg pm(so taking it twice a day) and has been on it since August of 2008. However, she does not have epilepsy. I wonder if she should still be on Keppra. She takes so many pills. Does anyone have any information linking the consumption of many prescribed drugs to the cause of GCA? Not sure where to start with getting any help from her many dr's. with hipa laws and health care proxy's, as he is her husband and we don't know how much information, if any, they will share with us.They are living in another state so we don't get to see her. He brings her home in the summer and she doesn't seem to have the many problems that he says she has until once they are back in their state. He says that he is sharing the info with family now as her condition is worsening. He also states that Vasculitis is an immune disease affecting all the major organs of the body. That there is no cure, that the body attacks itself, and that prednisone only slows the process. That they are in year four already with a 5-7yr conclusion(?) as he put it. Making it sound as though our mother is dying and there is no hope for her. I don't feel that we can successfully discuss this with him as there seems to be a lot of descrepancy in what he says. PLEASE ANYONE WITH SOUND ADVISE RESPOND!!! THIS IS URGENT!!! We need to know where to start in the process of helping our mother fight for her life. Please share your knowledge and point us in the right, immediate direction. bny
Trueheart - I was diagnosed with Polymyalgia Rheumatica/Giant Cell Arteritis 8 months ago and have been on the Prednisone ever since. I cannot seem to taper without causing flare-ups. I have read all of your posts and can relate to almost all of it. Yes, it is an auto-immune response within the body and there is no cure and no one knows why it happens. The average age of onset is 70 years and it affects women more often than men. My onset was at 51, I am now 52. The doctors say that I will likely have only about 7 years to live--I don't know if that is true for everyone, but I seem to be a complicated case. I would like to say that Calm plus Calcium powder (lemon raspberry is my favorite) helps me to rest better and keeps me from cramping. I also take Wobenzym and Devil's Claw (taken together, they help decrease inflammation) to help with the pain. The disease and Prednisone have caused me to have high blood pressure and high cholesterol. Auto-immunity problems make a person completely out-of-balance metabolically. I wish you all the best in your coming to terms with the disease. It is very, very depressing and we must take it one day at a time and make choices we don't care for. For me, having doctors with so many opinions has been confusing and has made me choose poorly at times. I wish there were standardized care.....
Polly60 - Diagnosed with PMR October of 2011 and have been on Prednisone, starting with 40mg and not have tapered to 5mg. Still having neck and shoulder and also hip aching. Many of my symptoms are the same as all of you. I do not have Temporal Arteritis, thank goodness. Has anyone tried Devils Claw as a supplement to Pred.?
I am Type II diabetic and this now appears to be under control with the addition of nighttime Lantus. I would appreciate any information that you could share with me.
Beatrice53 - I have just been diagnosed with pmr but refused to tale the medication I have gone for a more natural tablet, Juice Plus it has been tested by a lot of doctors and helps with the Immune I am not saying it is a cure but anything is better than steroids the basics cost £37.00 pound a month but you need to keep taking them to feel the benefits, if you need more information please contact me
Ruth 60 - Ruth 60
I have had PMR and TA since 2009, probably triggered by a swine flu virus and both my late mother and her father had it. Getting a diagnosis and treatment has been a nightmare and then there have been relapses. now I also have an abnormal heart rythmn to contend with. My cardiologist believes this to be directly caused by the TA irritating my heart. The rheumatologist denies this. I am currently on 9mg prednisolene daily, a reduceing dose. Last summer I had to take 90mg daily to prevent blindness. Preventing blindness was a priority, and the unpleasant side offects of the large dose of prednisolene were worth putting up with. Has anyone else hard heart problems at the same time as TA? also I have had two seizures whilst in relapse, now treated with epilepsy medication. Again the epilepsy specialist believes that this is directly casued by TA and the rheumatologist says not. Who to believe? Has anyone had similar medical issues?
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