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Rheumy Update, Going To Trial Prednisone


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#1 kiwimum03

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Posted 29 November 2006 - 09:50 PM

Hi everyone,

saw the rheumatologist today, and had a little hope that perhaps he might give me a diagnosis. I shouldn't have had so much optimism.

My labs were great, the best the have been since May, which of course is good, but didn't help him in his search to find out what is wrong with me.
My ANA went down from 1:320 Nucleolar pattern to 1:80 Homogenous pattern, and my C-reactive protien and ESR rate had come down to normal again and my IgG was slighty high.

Everything else was normal, so it was very puzzling to him that I had even more symptoms to share with him on this visit.
I mentioned the food sticking in my throat, trouble swallowing, tight skin, painful sunburnt feeling skin, very bad swollen joints in my hands and ankles.
Its all a mystery!

He said clinically he can see what I am talking about, I just don't have any lab work to back it up, so he is going to run an ANCA test as a longshot, but is sure that will be negative.

He said we could try Prednisone for 2 weeks to see if that will help with some of my symptoms, and if it does that could point him in the right direction.
He still seems to know what he is looking for, and says it sometimes happens that the labs don't match the clinical symptoms, and we might have to wait it out.
He kept saying Lupus type problems alot........and I asked him if I had Lupus and he said he didn't think so, so I am a bit confused what he was talking about.

I am curious for those who are on or tried Prednisone, if it two weeks it could help my joint pain and swelling??

I am too tired tonight to look up info on it, that will have to wait until tomorrow.
I do have medically controlled high bloodpressure, so I am a little worried it may effect that.

He mentioned side effects of weight gain and insomnia.......are there many other side effects I should know about?


He said my tests for anklysing spondolitis had come back negative.....yipee!
but said that my degeneration in my thoracic spine was not good, I had a few squashed vertabrae and some bone spurs that were indicative of a previous injury.
He asked if I had ever had a spinal injury, which I never have, and I thought perhaps my scoliosis may have caused it and he said that no, my scoliosis wasn't bad enough to do that. And I may have lost a bit of my height from the squashed vertabrae......so that was interesting. He was stumped why it was so bad since I am only 31.

Can't think of much more now.......so very tired.

So no answers and I don't even know when I see him again. I have to ring after 2 weeks to let him know how the Prednisone works.

Hugs to all,


Irene

#2 Heidi

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Posted 30 November 2006 - 03:04 AM

Hi Irene,

I am sorry you are not closer to a definitive diagnosis. I know how frustrating it can al be....I am diagnosed with "undifferentiated connective tissue disease" and my rheumatologist seems stumped like yours. Initially he thought I was going to develop a full blown case of scleroderma and he still thinks I am more like a limited scleroderma patient then anything else, but I don't have significant skin involvement. He has commented that my disease has been all over the place....whatever that means!

I was put on a short term course of prednisone to see if it would help my vertigo thought to be cause by autoimmune ear disease OR atypical meniere's. It did nothing to alleviate any of my symptoms and made me very restless and antsy (like I wanted to jump out of my skin), took away my appetite and I couldn't sleep. It didn't touch my vertigo or relieve any of my pain. But, others have had very good results with it. As others have said on here, it really is a case of trial and error with each of us regarding medication as it seems different things work differently for all of us.

Please do keep us posted on how you make out with the Prednisone.

Warm wishes
Heidi

#3 whirlway

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Posted 30 November 2006 - 05:34 AM

Irene, it really depends on how much prednisone you will be taking. If it is a small dosage 5-10mg and will be weaning off, probably no ill side-effects. However, if you start taking larger doses, in my case 80mg, don't expect to be sleeping much or walking through or by the kitchen without eating. :P At least that was how I reacted to it. Prednisone is the drug we all love but hate. It will mask your symptoms without really correcting the situation. Yes, you will prpbably not have as much pain, but the consequences, WOW. I took prenisone for over 20 years, anywhere from 10mg to 80mg. For one of my surgeries I was given 500mg by IV. Talk about the munchies. After you take pred. for a long period of time, your body forgets how to make the drug naturally, because you do make it on your own, 5-7 mg daily. My body no longer produces it, so I will probably have to take 5mg a day for the rest of my life. I am now taking cellcept, through trial and error of several different drugs along the way. My weight was over 200# for many years and was rising. After weaning off the large doses of pred. I lost over 80# in six months.
Keep in mind, this drug effects people in different ways. If I had to do it all over again, I would never have started taking it. At the time, I didn't feel as though I had a choice, I had three small children, was trying to work, and was desperate for anything legal to help me feel better and make it through the day. (My kids all have elaborate counted cross stitch names done out of carebears due to my not being able to sleep at night.) :)
Sorry for rambling, but as I said before it is the drug we all love to hate. It can do some great things but at a huge cost to your body later on.
Good luck.
~whirlway


#4 whirlway

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Posted 30 November 2006 - 05:58 AM

Irene, it's me again. I was about your age when my trial dose of pred. started. Just wanted to let you know that you can send me a private e-mail if you have any more ?
~whirlway


#5 kelowna52

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Posted 30 November 2006 - 06:30 AM

Hello Irene, sorry to hear your having problems. I was on Prednisone for a short time and I had to stop it. If you have bad acid reflux before you start it, it does make it worse, at least it did for me. Plus my migraines got worse, but like everyone says on this board, all of us have differant results from differant meds. Good luck to you I hope it works out for you.

Jackie S.

#6 kiwimum03

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Posted 30 November 2006 - 09:17 AM

Thanks Heidi, Whirlway and Jackie,

It was nice to wake up to some quick replies this morning!

I haven't eaten breakfast, so I haven't taken my 40mgs yet, I guess I had better get on it soon. I just wanted to read what everyone had written first, and I appreciate all of your responses, it helps me get a perspective on it.

Heidi, interesting that the prescribed it to help your vertigo, I sometimes get dizzy spells and have tinnitus 24/7, and would be wonderful if it could help with that, but I am not feeling too hopeful.

Anyhow, I shall go now and take my first tablet, it is only 2 weeks so hopefully, if it doesn't make me feel very good I can stop it sooner.

Hugs,
Irene

#7 janey

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Posted 30 November 2006 - 10:05 AM

Irene,
I'm sorry you haven't received a diagnosis yet. UGH! Your frustration is understandable. I hope the prednisone help to eliminate or at least, reduce the pain. Three years ago I was started on low dose prednisone (10mg/day for 2 wks, then 5 mg/day for 3 years). I don't know about the pain, but it sure did the trick on the fatigue - and it was immediate. Eventually, the pain subsided, but I was also on methotrexate so I can't tell you what did what.

As Whirlway mentioned - prednisone is one of those drugs that you have to gradually come off of it once you've been taking it for a few weeks. Two weeks may not require it. I do know it took me 6 months to be weaned off 5mg/day! I've been off it now for 3 months with no problems. Here's the drugs.com info sheet on prednisone.

Please let us know how it works for you.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#8 kiwimum03

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Posted 30 November 2006 - 12:07 PM

Dear Janey,

thanks you for your message and also the info sheet on Pred. That is what I have been looking for.
I am too, worried about the tapering side of it, it seems quite sudden just to stop, but I am going to talk to my family doctor about it on Monday when I get my bp checked, just to put my mind at rest.

Fingers crossed all goes well.

Hugs,
Irene

#9 bookworm

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Posted 30 November 2006 - 09:24 PM

Hi, Kiwi,

Prednisone, especially at higher doses, can certainly have some bad side effects, but, I have not experienced any of them.

For me, the Prednisone has been wonderful. I have been on and off it for about three years, and the highest dose I ever was on was 40 mg. I wasn't on that high a dose for long, however and soon got off it altogether.

Then I was put back on it for rheumatoid arthritis symptons. Honestly, I believe I'd have had to get a wheel chair if it hadn't been for the Prednisone!

You asked if it could start to work in two weeks. You bet it can! It starts working in hours -- maybe minutes. It's very fast.

What it does, I believe, is reduce swelling. This is why it helps with rheumatoid arthritis. It also helps with breathing problems and is often given to asthma patients.

It probably does other things, but, for me, the swelling is the issue, causing really awful pain. If the swelling is in my hands, I sometimes can't turn a car key in the ignition, open a can of food, turn a door knob, etc. If the swelling is in my ankles, I can barely walk -- well, you get the idea!

You absolutely do not want to abruptly stop taking it, though. If your doctor wants you off it, he or she will tell you how to taper off, and you want to follow those directions carefully and not rush the job.

The thing I worry about, regarding Prednisone, is the fact that it weakens the immune system. Of course, that's exactly why it helps me!

My immune system is attacking ME. The Prednisone makes it stop. However, the risk is that my immune system also won't be strong enough to help me fight off a cold or flu or whatever.

I try to overcome this by doing whatever I can to stay healthy! I am a hand washing nut! I have a little bottle of hand sanitizer in my car and I use it after every trip into a store of any kind. I figure people have gone in with illnesses and touched the carts and the merchandise and so forth.

I also do the other usual things to try to stay well -- good food, lots of water, plenty of sleep and rest.

At the moment I am down to 12 1/2 mg of the Prednisone and I am working to get it back down to 4 mg. For a good while I was only on 3 mg., but pain caused the doctor to up it to 5 for one week, then drop to 4. She advised me to just plan to stay on 4 for awhile and reminded me that that is a very small dose.

Unfortunately, I had a terrible flare-up of my arthritis about three or four weeks ago and had to up the Pred. dose to 20 mg, which is what we are working down from now.

Sometimes it's a balancing act! I'd love to get off all drugs. They all have side effects in some people and some of the side effects are really bad! But, Prednisone is helping me to live a relatively normal life and it helps a lot with the pain.

By the way, I had terrible acid reflux, which is now controlled by a prescription. But someone mentioned Prednisone's effect on acid reflux. I just want to say that I didn't notice any change in the reflux problem with the addition of Prednisone.

I hope it works as well for you as it does for me.

Mary in Texas



#10 kiwimum03

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Posted 01 December 2006 - 11:19 AM

Hi Mary in Texas!!

Thank you so much for your message!

I have already noticed this morning that the swelling and tightness in my elbow and forearm has already gone down by about 50%. So of course the pain has eased so much since the pressure has eased, so that is fabulous!

I was awake until 1am this morning when I had to throw up because of food sitting in my throat, but then I had a wonderful sleep (which was helped by the fact that for once none of my kids woke up!)

The terrible headache I had yesturday has now gone, and I hope it doesn't come back today.

I am like you, I have my hand sanitiser in my bag and a small one in the car, and I wash my hands quite a lot......doesn't help the dryness in hands, but thats okay, just slop on the moisturiser.

Thanks for your message Mary, it was very encouraging, and I know everyone has such different stories to tell, which is why I posted, it is good to get so many different perspectives!!!

I hope that your flare calms down and you are able to lower your dosage, but it is great that you have something that works well for you when you need it.

Big hugs,
Irene in New Zealand

#11 jefa

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Posted 02 December 2006 - 12:19 AM

You make a good point, Irene, about posting all the various experiences so each of us can gain perspective. I do think that is the most valuable thing about reading and posting here. It is so easy when you are flying solo to either blow your own symptoms/reactions/feelings out of proportion and end up in panic or to talk yourself into believing that you are imagining the whole thing.

#12 Guest_Sherrill_*

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Posted 02 December 2006 - 02:09 PM

Hi Irene,

I'm a bit late coming into this thread! But I had an excuse..... yesterday was my big 6 0 birthday!! No big celebration, just my husband and mother at home, but it was very nice all the same, with nice "prezzies"! I'll have to say when I first became ill at 50 most people, including me, thought I'd barely make it to 55 let alone 60. But here I am!! :D And that was done one day at a time.

Firstly, I was thinking of you a lot on Thursday, and wondering how you were getting on at the rheumatologist's. It appears to be a mixed bag doesn't it? On one hand you want a diagnosis, but on the other hand you don't really want to hear you have scleroderma. I do know the feeling.

The first rheumatologist I saw didn't seem to want to commit himself to anything, but after much prompting from my general practitioner at the time, came up with UCTD. I'd never heard of that then and wasn't too impressed with him.

The second rheumatologist I saw did diagnose my diffuse, systemic scleroderma, but was unhelpful in most things. He offered me penicillamine, which I declined after reading about it. He also had me try colchicine which did nothing and made me very nauseated, so I stopped that. He gave me a low dose antidepressant to ostensibly help me sleep, but all it did was make me jittery and hyper!

Last but not least he gave me 10mg of prednisone to try. As others here have said, this med can affect everyone differently. I had great hopes for it, but it made me feel FAR worse than I was already feeling. I felt I had a severe dose of the flu, and so fatigued it was unbelievable. I phoned the rheumatologist, and he said to UP it to 20mg!! That made me crash completely, and I was becoming so disgusted with him for various reasons, that I didn't contact him again.

I read how to wean myself off prednisone, and proceeded to do so. As everyone has said also, you do need to do this gradually. As it was some time ago, I can't remember the exact way I did it, but it was something like 5mg off, then leave a few days. Then again, and once I was at 10mg, I reduced in smaller steps, something like 2mg, then 1 mg, until I was at 1 mg. I didn't notice any bad effects doing it this way. And I swore never to take prednisone again if I could possibly help it!

However, already you say it has given you more energy, and less pain, so that's great! You may be a good subject for it. But I think going from 20mg. to nothing is too much! Knowing the doctor, I am a little surprised at this. However, I would be inclined to phone the rheumatologist's secretary, tell her your concerns, and ask if she could relay them to the doctor. Also ask her to phone you with his answer, or perhaps when you could phone back to find out. I was only on prednisone for 2 weeks, but I still came off it slowly. Ended up being on it for a total of about 3 and a half weeks.

From the time I saw my first rheumatologist, to seeing the second rheumatologist who diagnosed me it was about 6 months. My disease symptoms came on very fast once they really got going, and in that time it became obvious what I had. But I still had to "wait it out" too, as he said to you.

My ANA started at 1:640, at least that's what it was when they commenced testing it. It progressively went to 1:1280, then 1:2560, and it is now back to 1:1280, and has been for several years. Mine has a speckled pattern, and I also am positive for anti Ro(SSA) extractable nuclear antigen.

Recently I was also tested for anti Cardiolipin antibodies, also known as IgG, and it came back as a low positive at 11. Should be less than 5. So I guess I am similar to you with this one.

The comment with this was:

Anticardiolipin antibodies can be found in the primary antiphospholipid antibody syndrome, SLE and other autoimmune diseases, and some infections. Clinically significant antibodies will often be associated with a lupus anticoagulant.

The significance of low positive (less than 20GPL/MPL) antibodies is unknown.


I had a lupus anticoagulant done also, and that came back as not detected.

If you phone the secretary I would also be inclined to ask if/when the doctor wants to see you again, as he hadn't specifically said.

Good luck with everything, and keep us posted on how you go.

#13 kiwimum03

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Posted 02 December 2006 - 08:11 PM

Hi Sherrill,

firstly let me say CONGRATULATIONS on your 60th, woohoo!!!!
I am glad you have a lovely time with your family, and great prezzies.
What a joy to celebrate another 10years, you are one tough lady and a wonderful inspiration to me.

Thank you so much for your email, I was hoping that you would write in with your thoughts.
I am definately going to call the rheumatologist tomorrow, he only gave me the one script, and I can't even try and taper myself as the lowest dose I have is 20mgs, so I will need some more lower 'mgs' to try that.
I am seeing my general practitioner in the morning and have a chat to her about it too, and keep her updated.

I have found that the Prednisone has definately taken away my tiredness, and eased the swelling in my arms, but the last 2 days my ankles and feet have been swelling up quite uncomfortably and painfuly for a couple of hours during the day.
My BP is usually quite well controlled, but of course I know the signs and hope that the edema isn't my BP rising, let the doctor check it out I think.

I also noticed when I was in his office and he was going through the notes on the computer that he had written down that I have some erythema on my face.
I had asked him about the little red spots/flecks on my face as well and he was very non-committal, and now I wonder if the erythema means anything?

Oh, sometimes it all seems a bit mystery to me, and I just want to forget it all, if only my pain would let me!

I have one more test to go next week and that is the ANCA blood test. Not too sure if that means much, but I guess we will just wait and see.
He seems sure that it will come back negative though.

Thanks for taking the time to write, I will let you know how I get on.

Big hugs,
Irene

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Posted 04 December 2006 - 10:26 AM

Hi Irene,

Thank you for your birthday wishes!

I'm pleased to hear that the prednisone is having some positive effects, but the ankle swelling is a bit concerning! Do ask your general practitioner about this.

I wonder if the red spots on your face could be telangiectasia?

Do keep us informed as to what the doctor/s have to say.

#15 kiwimum03

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Posted 04 December 2006 - 01:32 PM

Hi Sherrill,

Yes the ankle swelling is a worry, and I saw my general practitioner yesturday, and she said she didn't see any sign of edema (well of course not, it had gone down while I was sleeping!).
My Bloodpressure was okay at 130/90, but I did remember after I gotten home that she had used the large cuff and she usually only uses the regular one, so I wonder if then perhaps it was higher than that.

I am going to go and see her nurse in a couple of days an get it checked again, and see if we need to adjust my BP meds.

I asked her about the tapering of the Prednisone as well, and she did think that jumping from 20mgs to nothing was quite a jump, but since I was only on it for 2 weeks she thought I could handle it okay, she did say I would be tired when I finished it.

I mentioned the food stuck in my throat, heavy chest etc...she listened to my chest and didn't think anything was wrong...........very frustrating when they just look at you like you are making it up!!!

I am starting to get tired again, which surprises me, but I just have to go with it I guess. (mind you how many nights can you stay up until 1am before you start to lose it!!)
My joint pain has eased, but I do have quite a lot of muscular aches in my shoulders, arms and calves (the deep ache you get when there is a storm coming) is that normal??

Also the hot sunburny feeling on my skin has come back, and unusually enough my lips are VERY pale today and I can very clearly see the couple of red spots I have on them.

I think I do have quite alot of telangiectasia on my face, I have found it quite hard to find any pictures of it on the net, but if it is little red dots that look like tiny blood vessels on the skin then I have quite a few different ones on my face, chest and arms.

I feel a bit discouraged by the negative tests but, I can't ignore my syptoms, so I will jsut keep plugging along.

Hugs,
Irene

#16 Guest_Sherrill_*

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Posted 04 December 2006 - 03:37 PM

Hi Irene,

I have just posted a reply on another message which may help you also. You will find it at:
http://www.sclero.or...o...opid=2418

I would be surprised if the size of the BP cuff made any difference to the reading, but maybe someone else has found this. Your reading does sound OK, though I do know my renal specialist prefers the diastolic figure (bottom one) to be under 90. However, I wouldn't worry about it.

If your ankles come up again do go back to the doctor, and if possible make an appointment to see her when you think they'll be obviously swollen.

I do remember that "sunburned" feeling well!

The pale lips can be as a result of several things, one of them being anemia. Have you been tested for this as it is common in chronic illness? Tiredness can also be a symptom of this. Don't go taking iron though unless it is prescribed for you.

There is a page on the ISN website about anemia: http://www.sclero.or...mia/a-to-z.html

And another one about my experiences with it: http://www.sclero.or...ill/anemia.html

And here's a page about telangiectasia:
http://www.sclero.or...ngiectasia.html

I do think it might be advisable to also check with the rheumatologist's secretary about going off the prednisone. Ask her if she would check with the rheumatologist about it.

Good luck!

#17 Sherion

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Posted 04 December 2006 - 04:42 PM

Sherrill and Irene, The size of the blood pressure cuff does make a difference. My readings are entirely different depending on the cuff. My arms are not small so the regular size cuff reading is not correct. They always have to use the larger cuff to get an accurate reading. At least this is my experience.

Sherion

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Posted 04 December 2006 - 05:18 PM

Hi Sherion,

That's interesting! I have quite small arms, and the larger cuffs sometimes seem too big. My own BP machine has a size which fits me well, though other larger people have tried it, and found it nearly too tight. Hmmmm........ I wonder if BP readings I have had in the past with larger cuffs have been correct?

Do the different sized cuffs make your readings lower or higher?

#19 kiwimum03

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Posted 04 December 2006 - 08:56 PM

Hi Sherrill and Sherion,

Thanks for the links Sherrill, I will have a good look at them.
I have just had a CBC done 4 weeks ago, and my iron stores were normal so I would be surprised if that was causing the pale lips. Its so weird though, my husband and I just noticed it today, its like I woke up with it.

The only other time I have seen my lips pale like that is after I lost a lot of blood after my first c-section, but I will keep an eye on it.

I must admitt I am a bit timid about calling the rheumatologist about the tapering, as of course I don't want him to think I think he doesn't know what he is doing, but I know I am going to have to, as I don't want to run into any problems.

Regarding the BP cuff size, it is awkward, as I am just below the measurement for the big cuff, which I think is 35cms, my doctor normally will use the regular size, to make it more accurate to my arm size.
I hope that makes sense.

If I use the big cuff my bp is usually about 130/85 (which of course is great) and on the regular cuff it sits at about 135-145/90-95 and this has been normal for me for about the last year. and we have been trying to get it down, and she just added in a diurectic about 3 months ago, and hasn't done much better yet.

I think I have just confused everyone, but I hope that made sense.

Sherrill, is that 'sunburned' feeling a scleroderma symptom??

Sherion, thank you for writing with your BP experience, its quite amazing how much difference there can be depending on the cuff size.
I had pre-eclampsia with all 3 of my boys and of course my BP skyrocketd each time (in theatre with my last child it got to something crazy like 220/175), and of course every nurse used a different sized cuff everytime they came and saw me afterwards.
In the end I just said use the regular size, even if you think I am large at least if we stick to one size we can get some consistancy!!!

Well I will go and read the links now, thanks again for the info!!

Hugs,
Irene

#20 Sherion

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Posted 05 December 2006 - 04:51 PM

Sherrill, If they use a regular size cuff on me the reading is usually A LOT lower. If they use the larger cuff (because of my fat arms) I get a higher reading. One time the smaller cuff read 110/60 but the larger cuff said 160/85. The smaller cuffs even pop off sometimes. I also have a wrist cuff at home that registers the same as the larger cuff at the doctors office.

Sherion