need some sugestions | Arthritis Information
Hi everyone,
This is a cry for help, if any one can give me a suggestion as to what to do. I am feeling so bad it is scary, and I have to go on a trip.
I was on 20 mg 0f pred. and went to the dr. told him how i felt asked if he could give me cortizone shot or b 12 shot, anything to make me feel a little better. he said no to both that i am allready taking pred. and b12 will not help unless my b 12 is low
he told me to up the pred. i went to 30 three days ago and i do not feel any better. i am tired and weak and hurt all over, can not even lift my arms and a lot of difficulty walking. i am also very shakey, is this the pred?
Should i try 40 mg. of pred?
Georgiana
Georgiana,
Have they checked at all to see if you might have GCA? If you do indeed have PMR, and the 30 mg is not helping, I wonder if you also have GCA. If it is not PMR or GCA, your docs need to figure out what is wrong and get you some help pronto. I don't know if prednisone makes a person shaky; I never had that problem. Could you possibly have fibromyalgia? I don't remember if you said your sed rate is high or not. I can imagine how scary and very frustrating this all is for you. I am certainly praying for you. Don't know what else to do; wish there were something. Is there someone going on the trip with you? I hope so. Keep us posted.
Reni
Georgiana - Are you taking chromium picolinate & biotin to replace the chromium depleted by the prednisone? The shakiness could be from low blood sugar. If not, it's a possible solution. Try 600 mcg of chromium picolinate & 250 mcg. of biotin daily, to start with. You may have to get it from health food stores, as it is not usually carried in regular drug stores.
Following quote:
If a person is deficient in chromium they may experience one or more of a wide variety of symptoms. These may include: increased blood cholesterol, problems with sugar metabolism, fatigue, an increased of accumulation of plaque in the aorta, increased blood pressure, anxiety, impaired physical growth in the young, slower healing time after surgery or injury, atherosclerosis, decreased glucose tolerance, and possibly decreased fertility and longevity.
Chromium picolinate is the most commonly used synthetic supplement to correct imbalances in glucose metabolism due to chromium deficiency.
(end quote)
Georgiana, I got weak and trembly on 20mg pred, and I see in some articles that muscle weakness and/or tremor can occur as side effects. So yes, pred can do this. I wonder though why 30mg is not relieving your pain after 3 days? Is your diagnosis for PMR and nothing else? Please see your doctor again, maybe you need a painkiller as well as the pred? I really feel for you, I know how much this trip means to you and it's just awful that you feel so bad. (((HUGS)))
Bless you, Georgianna. I'm like Reni...wondering if you even have PMR. 30 mg of prednisone should have made a huge difference. I think you're going to have to get another opinion. I know that's a lot of trouble and probably a long wait, but somethings not right. If you have PMR it should respond dramatically to 30 mg.
I bought some subliminal B12 yesterday with no one's permission. 3 different friends told me it made them feel better. My b12 and iron are both normal now, but out of desperation I use my own brain which may or may not help. But, if doctors don't have the answer we have to do something. I have forgotten. Do you take anything for pain like darvocet?
Thanks everyone. I will try the chromium picolinate, and the b 12.
I do feel a little better today, after three days of 30 mg of pred.
I also have darvocet for the pain, which I try not to take unless necessary.
My sed rate was 65 last blood work, I don't even know what is normal
My two daughters and son are coming with me on the trip, they told me not to worry they will take care of me
love you all Georgiana
Bless you, Georgiana!
I am so glad to hear that you have family traveling with you. That should eliminate some of the worry about getting along. I don't remember if you ever told us your age. My rheumatologist told me that if you're over 50, to add 10 to your age, divide by two, and that will give a "normal" sed rate for you (even though everything I read on-line abut normal for older women is 30 at the highest). So, yes, 65 is high. My rheumatologist was concerned when mine hit 62 and said if it didn't go down, he would push going back on prednisone. Thank goodness it did go down. If yours is 65, and you are still taking prednisone, maybe you should ask them to check for GCA, or have they already? Glad you are feeling some better today, though we all wish that you could get some major relief. Hope you can enjoy the trip; it is such an exciting time for you. You must be so proud of your son. Take care, and know that we area all pulling for you - to have a good trip and to get your condition under control.
Love you,
Reni
Reni,
Thank you so much for your concern. I don't know what I would do without you guys on the forum, I feel like I made some best friends in all of you
I am 69 years old, so I think the sed rate is a little high, Dr. never mentioned GCA, what are the symptoms of that. Is that more serious than just the pmr?
I do think the pred is kicking in,was able to go to the store and not feel like I was going to die, how awful, but it's true, I felt so terrible.
I also took a darvocet, but I don"t care, right now I just need to feel better, and I will deal with all this when I get back.
This is an exciting time for all of us and I just want to enjoy my sons accomplishment.
Betsy, I bought B 12 shots, they are little tiny pills you put under your tongue for energy, figured they can't hurt. Thanks
Ruth, I got the Chromium picolonate and biotin. You may be right about the low blood sugar, when I skip breakfast, by 11 o clock i feel really tired and weak and shakey..Thank you for your help
............................ love to all, Georgiana..............................
Georgianna,
Yes GCA is listed as a more serious by product of PMR. I don't remember
all the symptoms, but if you google PMR most of the articles talk about
GCA also..
I am glad to hear you are slightly better/ Do you take any tylenol with
your pred? I take 3-4000 mg/day although I am down to 2700 now. I am
also taking Omega 3 per both dr and articles. I am starting Vit D soon and
looking into the B vit. My dr suggest that taking the things that are
depleted from the adrenal gland by the Pred can really help.
I am new to this, so i don't know how much help I am, but believe me we
all understand the pain, and are keeping you in our thoughts and prayers.
pgr55539289.6738657407I googled gca pmr and got this page, which seems to give a good answer
http://www.clevelandclinic.org/arthritis/treat/facts/polymya lgia.htm I was diagnosed with PMR and temporal arthritis TA in June 2005, and i googled now for pmr ta and got this page
http://www.emedicine.com/EMERG/topic568.htm It seems as if GCA and TA are synonymous
Ragnar
Georgianna, I started the b12 yesterday. Out of desperation I have tried anything anyone suggested. So far none of the supplements have done anything, but who knows. It's called sublingual or somthing like that, if anyone is iterested. It means "under the tongue". Bypasses the stomach and intestinal tract and goes straight to the blood.
One morning this week, I cried when I woke up... just because I woke up. Just to know I had to face another day of this exhaustion and pain and try do a few things to get by. In the midst of the tears I said a prayer. "Jesus, you said you would heal us...I've been begging you for 2 1/2years...why are you waiting and waiting?!!!" It's just anquish, Georgianna, that's all one can say. I stayed in bed all morning and began to feel better in the afternoon. The next day was as normal as it ever gets, and it has been good since.
We have bouts of deep depression where we think we can't do it anymore, but He always sends help. You really do seem to have more pain than any of us. I think you should not worry about the darvocet, just take it and get by. Jesus gives us darvocet, too. It's very mild they say, and if it helps, do it. It makes me depressed if I take it too many days in a row, but that's ok, because I know it's going to happen.
Today's a good day and I'm so thankful. I hope you and your family have a great time and wish you all "good days" on your trilp. Love
Betsy,
I really feel for you and Georgiana right now. You both sound as if you are having a terrible time with the PMR. I remember those days where I wished I could just sleep and not wake up. My husband used to say he wished the docs could just sedate me. Every time I'd see the rheumy, my husband would tell me "Come home with drugs!" It's funny, but it's not. I believe in the healing power through Christ, too, and wondered where I was missing it. Finally decided to quit dwelling on it and remember that one day I will be healed, whether it is in this life or the hereafter. If it's in the hereafter, I'll have a new body and won't have to worry about the aches any more. If it's sometime in the near future, that would be even better, but I'm not going to beat myself up any more stewing about it. I know that's easier said than done when you're in the middle of those really bad days, and it took me a few years to get to the point where most of the time I can kind of blow it off and carry on, and dwell on the good things in life. There is always something to be thankful for if we look hard enough. I am thankful to have met so many wonderful people on this forum. You've made me laugh and given me inspiration.
Glad to hear that today is a good day for you. I remember a guy I used to talk with years ago, who's really messed his legs up falling out of one of those "cherry picker" things, and we used to joke that our good days are nothing like "normal" people's good days. They'd probably consider our good days to be a bad day if they had one, but for us, we're thankful for even a little relief.
Thinking of you all and still praying for all to have more and more of those really good days!
Reni
Thanks Reni, What wonderful writing! We will no doubt be healed, but my patience grows so thin after days and days of pain and fatigue. I think Georgianna has more consistant pain than I do. Sometimes the depression shows in both of us. Also in Rose sometimes. It's just really hard on most of us who have this gosh awful disease.
I did so much better at first than I am doing now. I'm still at 11mg prednisone, was at 5 but had to go back to 30 (twice) and get back down to 10 in 2 weeks. The pain is minimal, but the fatigue is killing me. It's better now, though. Thanks for being such a sweet friend to all of us. Especially me. Love you, have a great weekend
Betsy,
Thanks for the kind words. You said you did so much better at first that you're doing now. I wonder if the prednisone kind of wears off after a while, or your body gets so used to it, that it just doesn't work as well. Or maybe we just felt so good initially on prednisone that it is hard to go to the lower doses and start having pain again. It's okay to lose your patience now and then. We're only human, and a person can take only so much of the constant pain and fatigue. With your anemia and all, can the doctors not find something that would help with the fatigue issue? I still have that problem, too, and most times (even with the trazodone or a tylenol PM) I don't sleep really well until I am so tired after several bad nights, that I can't help myself. But one night out of about 7 doesn't really cut it in the long run. I don't want to take anything like ambien, because I think you are not supposed to take it long-term.
My daughter came home for the weekend. We both had our eyes checked yesterday, and then just cracked up like you wouldn't believe over those cheesy sunglasses they give you after they've dilated your pupils. I told the optometrist, "We're so easily amused!!" It was a hoot. Heather had the kind you hang over your glasses and it looks like a huge uni-brow, and I had some rectangualr "lensed" ones with the ear pieces. If you've ever watched South Park on TV, I felt I look kind of like Officer Barbrady. We ran around and did some shopping (almost always a good stress reliever), and then went to PF Chang's and got dinner to take home. Yumm.I kept griping about all the traffic and wondered why it was so bad. Heather had to remind me it was Friday. All day I'd been thinking it was Saturday, and also wondered why my husband had to work on a Sat. Duh!!! That's what happens when she comes home on Thurs. instead of Fri.
Anyway, hope you're able to have a good weekend. Love hearing from all of you, especially when it's good news, but don't hesitate to vent here either. We're all here to help each other.
Love,
Reni
Betsy and Reni,
I started the b 12 and the chromium, so hopefully they will help, I should have done that a long time ago.
I do feel a lot better, on the 30 mg of pred. I do not like taking such a big dose, but I need to right now, today I did a lot, went grocery shopping and went this afternoon with my daughters and had tee-shirts printed with my sons name and the no. of his mission, we will all wear one the day of the launch.
I know what you mean Betsy, when you say you did so much better in the beginning. I feel the same, I know I am getting worse and I don't know why, I wonder some time if the pred is even helping, even on the 30 mg. I do not feel great, I am still tired and I still had to take a darvocet.
Thanks for everything............Georgiana
Reni, Sounds like you and your daughter had such a fun time. I enjoy my daughter too, that lives here in Texas. She left for Corpus Christy yesterday and will be gone til school starts. We went to a Tex Rep play last week. It was really entertaining, expecially for local folks to be doing the acting. It was entitled "I Love You, You're Perfect, Now Change". It was about relationships, problems, and a wedding. We were seated at tables instead of theatre seats and were served wine or drinks and wedding cake. It was so fun and different.
Well, Georgianna, We both seem to be feeling better today. They only had me take 30 mg for a very short time, reducing down to 10 in 10 days. This was the PCP that prescribed that. I've heard of that regiment several times, but it didn't work for me. At 30 I felt really good, started to have some problems at 20, and when I got to 12, the pain in my shoulder was unbearable. So, I called her for a refill and started over at 20mg, reducing 1 mg every 4 days. That's my own regiment. I'm at 11 now, and doing very well with the pain, but the fatigue is wearing me out. Fortunately I've had art work to do at home instead of murals. I can go rest or take a nap every two or three hours.
We will see what happens about the B12. I'll be surprised if it does anything, won't you? Oh, ye of little faith, Hmmmm. Have a good weekend, girlfriends, and hang in there. Love to everyone.
Hi Swede, Haven't heard from you in a while. Are you doing ok?Betsy,
Do you live in Texas? I have a mother and brother in San Antonio. And some of my husband's relatives live in Lorena, Texas. Never been there, but one of these days when I have enough time on my hands on a trip down south, it'd be fun to detour and look them up - maybe you, too?
Hi Reni, I live in a town of about 65,000 in NE Texas, not nearly as exciting as San Antonio. It's a border city, stateline dividing Texas and Arkansas. Very interesting, we have liquour on one side of Stateline Ave, while the other side is dry. Taxes are different. Food is not taxed on the Texas side but is on the Ark side. Also Louisianna and Oklahoma are very close, so they call it the "four states area". It has no claim to fame other than Scott Joplin, whom I had never heard of til I moved here. He was a black piano player with a very unique sound...in case you haven't heard of him either.
Let me know if you're ever coming this way.
Hi Betsy!
You must have missed my post about research on prednisone for persons with pmr a few days ago. I tried to talk as much as possible with the doctor that called me, because I understood that he knew much more about pmr than most other doctors. He told me that now that I was down below 5 mg he thought I would be free of prednisone in the near future. It was nice for me to hear but also for everybody else with pmr.
I am down on 3.75 mg (half of a 5 mg and half of a 2.5 mg tablet). It seems to work fine now that I reduce by 1/4 of 2.5 mg every 4 weeks or so. This seems to work fine for me but 1 mg at a time was too much. I had time for electrocardioversion due to atrial fibrillation about two weeks ago, but the last blood test a week before showed that my blood was too thick. Now I have to wait another 4 weeks or so. PMR and atrial fibrillation (irregular heartbeat) makes me tired when I try to walk but when I visited Paris four weeks ago for four days, I walked and walked without any large problems. If you are motivated it seems to be easier to stand the negative sides. I am still more or less painfree but I have started to understand why I have what I thought was a tennis elbow. It must be the pmr. Also stiffness in hips that I havenīt had before. I guess it comes with the reduced dose of prednisone.
Like you I take B12 and also Calcichew D3 with calcium and D3 vitamins. I hope that you will have more and more good days, Betsy and all of you. I myself will be 70 in a few weeks and I really donīt plan to be "powerless" with the present fatigue.
Like the rest of northern and central Europe, we have had a lousy summer so far. In most places of Sweden, especially in the south, we have had 4-5 times as much rain as normal in the summer.
Ragnar
Ragnar,
Glad you are getting down on the prednisone, and good for you to have that positive attitude about not planning to be "power;ess with the present fatigue".
This must be the year for excess rain in many places. I looked at some photos of the flooding in England. What a mess. And Texas has gotten more than its share this year, too, with lots of flooding. I think they have gotten more than we have in Oregon. That is very unusual. Betsy, did you get a lot of that rain, too, or did it bypass you?
Take care, all.
Reni
We have in the "other" Portland Finally a nice day here, and I am
feeling better than I have in as long as I can remember and my husband is
in bed sick! Can You believe it???
My son is in Germany & he also says it has been pure rain all summer -
global climate change is real.
It is interesting to me, when I thought it was bad discs causing my
problems I kept saying it would not get me down like it had in the past... I
kept powering through as much as I could and feeing worse all the time.
Now that I have this diagnosis and am feeling better, I find myself giving
in to the exhaustion more. Go figure! It's almost like I can excuse it more
since it is an illness - is that what it is? What do people call it? A disease,
syndrome, condition???
All of you should have a day as good as this one is for me... Thinking of
you and keeping you in my heart.
hmmmmm, I just realized it is not raining here and I feel better... wonder
how much is due to the lower humidity? But they are predicting rain again
tonight
pgr55539292.4534722222Thanks Swede, I did miss your other post. I'm so happy for you and jealous too! You will be well soon, a low dose of prednisone, and Paris. What more could you ask? Thanks for the update. It is so, so good to hear there is an end to PMR. We don't hear of happy endings often enough on the forum.Betsy,
I googled your town of 65,000, and it sounds as if there are some interesting places to see. I like historical things, and could spend lots of time in the museums. Yes, I'd heard of Scott Joplin - probably because of the "Entertainer" piece that they used for that movie a while back (was it "The Sting"?) But I didn't realize he had been born in the late 1800's. Had to google him, too. If I ever get out your way, I'll be sure to let you know. It's a "little" far from San Antonio, and I don't know if or when I'll ever get time to just travel around, but it sure would be fun.
Hope you're having a good week.
Reni
Hi Reni, Yep, you're right. It was "The Entertainer" peice that was Scott Joplin's claim to fame. I couldn 't remember the name of it.
I have a real miracle to share with you. I'm so excited. Yesterday morning early, a nurse from my hemotologists' ( the one who dismissed me about 3 weeks ago because there was nothing else he could do). I don't even know this girl, but she said she was just thinking about me and dug my name and number out of a trash basket at their office. She said she talked to the doctor about me. Remember he said he had shots for chronic anemia, but medicare wouldn't pay because the PMR causing the anemia wasn't "on medicare's list" I had called back and asked if I had a diagnosis of RA, would I qualify. She said no. When she talked to the doctor he said if they could confirm RA I would qualify for Procrit, another injection, but one that is also very effective. It is an injection primarily used for chemo patients who are suffering from anemia from chemo. I googled Procrit and many people felt wonderful after about 10 days. There's a class action suit involving some cancer patients that didn't do well, but I'm more than willing to try it.
They are in touch with my rhuematologist trying to get a diagnosis of RA, always suspected,but they have never just told me I have it. My paper work from MRI's etc make reference to "consistant with RA" several times last visit. I think it will work out.
I know you prayed for me. Thank you and other friends for sending me an angel nurse whom I do not even know. I believe in angels and miracles. My hemotologist is also an oncologist and his office is full of cancer patients, then there is me. Why would a nurse whom I do not know, in an office full of cancer patients...many balding from chemo, and others dying...think of me? We know why, don't we? Thank you.
Dear Betsy,
Very cool!!! I still get good chills when something like your miracle happens. I believe in miracles, but they still always surprise me - but bless me to no end. Thanks for sharing, and I will continue to keep you in my prayers.
Reni
I am so happy for you, Betsy! I hope this will be the miracle you need. You
remain in my thoughts.
I go to the rheumy for the 1st time Friday. I would love to know what you
all recommend before I go. I am on 15 mg of pred for the past week. If I
haven't said it before, I - like most of you - have a VERY high pain
tlerance. Since upping the pred frm 10-15 mg, I have been able to get off
tylenol completely. I really wanted to do that because t is so hard on the
lover and I have been taking higher than recommended doses for a year.
Without the tylenol I have what i consider "bearable" pain. it almost goes
away mid-afternoopn to early eve, but is back in the AM. If the DR wants
to stay at 15 do I push to go up to 20 mg of pred? (No side effects yet) or
do I live with the pain at 15 mg to not have as big a fight to get off it. My
instinct says go up amnd get rid of the pain completely to give my self a
break for a few weeks. Could I have your voice of experience?
Thanks and thinking of all of you
phyl
pgr555, Thanks so so much for your thoughts and prayers.
I try really hard to keep reducing the prednisone and have always managed til now. I think we all have to find our defining moment, like when we just give up and say to hell with getting off prednisone, to hell with trying to get well, etc. I can't stand it anymore, I want relief now!!!! If you think you are strong enough to hang in there, stay where you are on the prednisone. You can always call the rheumy if you have problems.
Thanks and love to you and Reni.
Betsy,
You are so right when you talk about finding you "defining moment", but I'll bet deep down you don't really give up. Maybe just temporarily. There was an article in my last AARP magazine ("Magical Days") by a guy who has a chronic illness. His philosophy is "either I could be bad at trying to be the person I'd been before I got sick, or I could figure out who I was now and learn to be good at that". That says so well what I've been trying to do. After I had those herniated discs and couldn't do so much of what I'd done before, and then the PMR, I spent years trying to fight what I really couldn't fight. Do you feel like you've gone through the grieving process? It's much like all those steps they say people go through when they've lost a loved one - the anger, denial, sadness, I don't remember them all, until you get to a kind of acceptance. You do whatever it takes to feel good (maybe not best, but good) and keep going. And no matter how much I see people here being angry and upset about what's going on with the PMR, I also see that we are all fighters. We continue to do as much as we can (sometimes too much), and we keep looking for answers, and we keep on. Yes, to hell with it all, and there are times when we can't stand it, but that's okay. We're still here, and we won't give up.
cheers Betsy, love to read your posts, (the miracle and angels) and Reni that quote from Magical Days is awesome, really good advice.
I have been thanking God for the past two months I have been without "big" pain, I can manage the little stuff, so good to talk to you all and keeping you all in my prayers.
Also have a miracle, our grandson hasn't kept in touch with us for the past 6 years, but received phone call, wants to reconnect, is coming for a visit middle of august..........what a joy, we prayed so hard for this.
Have a great day you all,
hugs rose
Rose,
That's great news about your grandson!!! And glad to hear that you are not having the "big" pain lately. I pray that will keep up, and you keep getting better.
Reni
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