My rheumy has told me that I can do a prednisone boost if I ever need it. Well, I think I needed it since I was dx.. !!!!
Actually, I weaned off the prednisone a few months ago. I wasn't on a high dose, only 5 mg/day and I went off very slowly at 1 mg/month decrease. I am barely able to get out of bed and then just to the couch. I'm freezing all the time, but do not feel particularly sick--or even sore joints (thank you).
A lightbulb went off (in my head) and I'm thinking this is what I need. I am going to start tomorrow in the morning. I will take 10 mg and then wean off in 10 days coming down 1 mg each day. I wonder if this will give me any energy or a slap in the butt? I have missed some of my weekly volunteer spots and I feel badly about that. They probably think I'm a slacker. but I love my airplane wonderland (aviation museum). I get to walk around about 12 airplanes of all sizes and ages in a nice enclosed building every time I "work." Well, enough of that....can anyone shed light on what I might expect with my Pred Boost? Should I tell my husband that I'll surprise him and clean house? Lucy
Hi Lucy :)
Are you sure your thyroid is OK?
Hypothyroidism causes most people to feel really cold all the time and also exhausted and possibly depressed.
Take care - Scottie :)
Hi scottie-
No, I'm not sure about my thyroid. I take THYROID for it. About a year ago, it was a little hypo for the first time in my long life. I don't think it's been checked since and I was just at my GP's for something on Friday. Ugh. I see my rheumy soon also and will ask her. Thanks, Lucy
Dryeye,
A prednisone boost, yaaahooo! I took prednisone for a ruptured disc about three months ago and wha wha wee woo, I never felt better in my life. I didn't need to sleep more then 4 hours a week, yes, 4 hours a week.
I too suffer from freezing all the time and my thyroid checks out fine, in fact, right now I am wearing a t-shirt, two long sleeve shirts a sweeter and an electric blanket. Not too much different then what I had on all summer, minus the electric blanket.
As far as cleaning the house, don't get carried away with this prednisone boost.
Epson, just how much prednisone were you on? I have my electric blanket on the couch too. Except mine's a "throw" instead of a blanket.
As far as cleaning house, it sure could use a prednisone boost. I'll let ya' all know. Lucy
Hi Lucy :)
I've been taking thyroxine for over 4 years now. I started on 25s and went up till I was on 150mcg per day. Last year the doc decided my TSH was a bit low, so she adjusted it to 125mcg one day and 150mcg the next. (Without a 7 day pill box I would have got really confused)
A blood test the week before last showed my TSH had shot up to 20. My endo has told my docs to keep it between 0.5 and 2, so 20 is way too high. I'm back to 150mcg thyroxine a day and will be retested in February to see if that's enough.
I must have got so used to feeling like 'crud' that this time I didn't notice it had gone wrong. (Even though I go on and on to everyone else about it!) A lot of thyroid symptoms are very similar to SjS and Lupus - and I just assumed the way I was feeling was down to those. WRONG! Hopefully - I'm going to have a better start to 2009 when they get the meds into the system!
It's worth checking twice a year!
Take care - Scottie :)
Hi Scottie-I'll try and absorb what you've written. I basically know nothing about thyroid because I've never had a problem I knew of until it showed up in a bloodtest last year. I should have talked to my GP about it Friday......but didn't. I think I'll call and see about getting a re-check. I'm freezing all the time, can't get up off the couch (literally) and am in bed all the time I'm not on the couch.
I am taking THYROID TABS 1/2 gr................30 mg........one time per day and that's been the same since last year.
Lucy
Hi Lucy :)
There's a really good thyroid forum at About.com
It could be worth look at. Unfortunately it's not unusual for Sjoggies to also have thyroid problems and they can make us feel about as bad!
Take care - Scottie :)
Scottie:
Does your doc ever check your free T3 level? The level of free T3 circulating in your system is what determines how well you feel. I hope you don't have the same problem I developed, which is that my liver was not efficiently converting the T4 to the needed T3. If you take a natural thyroid product, it circumvents that issue. Also, if you dissolve the med in your mouth under your tongue and it is absorbed that way, you can get around stomach/liver issues.
I have also been advised to split the dose, taking 2/3 in the morning and 1/3 in the evening to put less stress on the adrenal glands.
Sue
Hi Sue :)
I don't think free T3 is routinely checked here and I'm pretty sure my doc didn't. I think an endocrinologist may ask for that test if people are referred back to her because of treatment not working properly. That's probably why I harp on so much about TSH and its range. I know I feel best when it's in the small range that suits me.
My endo told me not to worry about T4 being a bit on the high side. I don't think she actually mentioned T3 at all. I must still convert OK because right up until this recent bloodtest things have been OK.
I have been extra forgetful recently and a bit anxious but I just thought it was pressure at work. The TSH must have creeping up for a while and, of course, brain-fog could also be SjS.
Take care - Scottie :)
Well, I took 10 mg of prednisone about 5 hours ago and am waiting for the vrooooooooooom. Lucy
It takes a couple of day before the VROOOOOM kicks in, its Prednisone, not Crystal Meth. 8)
I took my second dose of prednisone about 10 hours ago. I have stomach cramps and that's the only thing so far. :o
Lucy
Ha ha Epson!
It takes me about three days to feel a difference on prednisone at a 10 mg or higher dose. I feel nothing at 5 mg.
Genko
Third day reporting......no vrooooooom yet. I don't think I have anything from the prednisone yet. I'm on 8 mg today and will be 7 mg tomorrow and on down. Lucy
Because I have only been diagnosed with Sjogrens a little over two years, I have no idea what the different medicines some of you are taken. Is Prednisone something that will give you energy? If so, I desperately need this. I am so tired all the time. I just quit college online because I could not work my full-time job and come home and do school work, plus be a mother and wife. The only systems I have had is fatigue dry mouth/eyes and swelling in my parotid gland.
Any advice anyone can give I would greatly appreciate it!
Thanks,
Stephanie
No unfortunately Stephanie Prednisone is not for energy...it is a nasty med that they use to suppress inflammation and immunes system.Its side effects can be mood swings,weight gain,diabetes,osteporosis,osteopenia,avascular necrosis(bone death),acne,receding hairline,adrenal glands suppression if on a dose of 7.5 mg per day or higher(which is why the med must be tapered off of and not abruptly discontinued),humpback(fat deposits)...I think that is most of them. ;)
It is a harsh med that is often used when others fail...it is common in a dose pak for allergies,repiratory illnesses...but these are long term(what is being discussed)
Not a med to be trifled with...if you are having severe fatigue perhaps a discussion with your dr is best.There are meds like Provigil(I dont take)but they all come with side effects :-\
Be well...I hope I helped with the explanation
Kim
Ooops I must have misread a couple posts...lol
Thanks for the advice!
Stephanie
Thyroid - I have problems with one of the thyroid antibodies (I have Hashimoto's which can go hand in hand with other AI's, especially SJS) and right now mine is way out of whack. I am on 175 for 6 days and then skip a day to keep my thyroid in check but obviously it isn't doing anything for the antibodies. But my husband and daughter have Hashimotos' (hubby is hypothyroid and on meds but my daughter is not hypo yet but have bad symptoms and chronic hives from the antibodies so her dr has her on a low dose. Both of them are forever tired and cold. I had to ask specifically for the thyroid antibodies test and now since they did test out of the normal range, both of our drs keep a check on them.
So ask for that test if you are currently having hypothyroid symptoms but are testing within the normal range.
Hi Rita :)
have you ever been to a thyroid forum? There's a good one at About.com
One of the things that members there recommend is getting results of your blood tests. Very often, although docs say blood tests are in range, they are at the top end of the range and that can make people feel pretty ill.
My TSH is meant to be kept between 0.5 and 2. That's what my endocrinologist has told my GP. My GP was OK with it being at 6 because he said my T4 was fine. I felt as bad with a TSH of 6 as I did with a TSH of 42. Keeping it between 0.5 and 2 works for me.
If your daughter is feeling tired and cold it could be that a slightly higher dose of thyroxine could make her feel better. check her blood test results and check out the thyroid forum.
I also have Hashimotos.
Take care - Scottie :)
This is my 4th day of the prednisone "boost' and I don't feel any different. My thinking is that it wasn't the thing to help me right now. My rheumy had told me I could do this when not feeling well. I've only tried it this once, and know not to use pred when you don't have to. I will be following up in a bit with my GP about my thyroid and I see my rheumy just before Christmas. Lucy
P.S. Kim and Scottie have given a really good narrative of the perils of prednisone. Thanks, I couldn't have done it.
Good luck Lucy...I hope you start feeling better soon.
Take care
Kim
Hi Rita:
The T4 only thyroid meds like Synthroid don't work for everybody, no matter how high the dosage. Check out www.stopthethyroidmadness.com for a different perspective.
All the best,
Sue
Thanks, I will check it out.
Prednisone doesnt seem to do much for me either, except dry me out even more. Ijust had
100mg before my IVIG infusion, and it didnt help me with any of my sjogrens/lupus symptoms in the least. Alls it did was increase my anxiety, and I couldnt sleep for a few days. Maybe you need to up your dose a bit..maybe to like 20mg? your still on a pretty low dose..
Gursie