Hi all,
I am on my 4th day of a 3 week dose of Prednisone. I originally agreed to take it as I thought it would stop the rapid decline of my saliva glands but have woken up this morning with not even enough saliva to wet my mouth.
My first question is can I stop it now(or tomorrow as I took todays tablets) without any side effects?
Can anyone see any benefits of me continuing for the whole 3 weeks? Is there a chance my glands may recover a little?
I know these are probably questions for doctors but in Japan its very hard to find a DR interested in my cause.
Advise please!
GgcJap
If you are determined to stop it now you need to call your doc and see if there is any criteria he has that you should follow. Also, I have taken prednisone for years and dealt with it when my husband was taking it for years before he died. I have given it also when I worked as a nurse. I am not a doctor, but 4 days of 10 mgm isn't hardly having time to get your blood level up. If you want to see if it is going to help at all it would be wise to finish the 3 week trial. This is not a high dosage to take for 3 weeks. Your doctor is probably doing this to see if helps and it is a relatively low dose so the side effects are minimal if any when just three weeks.
In the end it might not do anything, but you will never know unless you finish. All the autoimmune diseases are the pits to try and outguess and sometimes we just have to do some treatments because we don't know what else to do----and neither do the doctors much of the time. It is such an individual thing and one treatment does not fit all. It is trial and error. Good luck. Irish
Have you used the Salogen (pilocarpine) or Exovac for the dryness. They both seem to work for most people. The Salogen causes sweating but often if you start the med at half the dose ordered for a few weeks your body sort of adjusts and the sweating isn't as bad. I was able to stick with the half dose because it worked for me.
Again thank you Irish,
In Japan we can't call our Drs although i wish we could. They don't even seem to have enough time/interest to talk when you go there. Hence this forum being my main source of information. Sort of like my second Dr/opinion if you will.
He didn't really explain much to me about the Prednisone except for we could try this. (Your explanation helps me verify what I was beginning to feel. I think he's as lost as I am with this disease.
It's also good to know that it takes time to build up in the system and that 10mg is not a big amount. I read on here all the problems that can occur albeit that was with higher doses of (tapering)? That may have spooked me a little.
I think I will follow through with the 3 weeks and see what happens. Thanks for the advice.
Thanks Irish :)
My daughter only took 10 MG of Prednisone for three weeks and had a terrible time coming off so everyone is different. IF you have only taken for four days you could break the tablet in half and then half again and go off. They give people dose packs and they are decreasing doses for a week. As, Irish, mentioned Evoxac or Sala Gen work better for dry mouth.
The above is my opinion only.
Anna
Thx Ohiolady, after much thought I think I will continue until the 3 weeks are up. If I don't try I'll never know. If nothing happens I can speak to my dr and taper off after that. My salagen isn't working like it was a month ago which leads me to believe(I'm no dr though) that the attack that started this thing is still ongoing against my saliva glands. If I can slow that in anyway possible It'll be worth it.
Thanks for the concern and advice.
GgcJap
Hi Gcg, just wanted to let you know that I take 10mg prednisone longterm and have not had any side effects. I have been on that dose since May I believe, before that I was on 5 mg for 8 month.
I agree with everybody, I would finish out the three weeks. I would hate for you to give up to early.
Good luck!
Tharrell,
That's very reassuring to know, 3 weeks shouldn't be too bad then. I'm not too sure what my Dr will want to do after the 3 weeks but any improvement will def be welcomed.
Thx again
GgcJap
I am going to add that everyone is different when it comes to the prednisone and steroid use. I have been on steroids(since) 2005 when I was started on 10 mgm a day and then tapered to every other day for a few weeks. I wasn't all that much longer that I got diagnosed with myasthenia gravis and my neurologist kept me on the every other day to help with my weakness and to help if I had a myasthenic crisis.
Over the years I have had to go up to 10 mgm every day and then tapered back to every other day and then to 20 mgm every day and working on tapering off and back to the 10 mgm every other days again. I did not have side effects for many years but when I went on the daily prednisone I started to have issues. They are not terrible, but they are still present. I was diagnosed with type 2 diabetes in 2009. Diabetes runs in my family but docs felt the prednisone helped to kick it in.
My bones are now to the point that I need the IV drug Reclast which I get next week. I have also developed cataracts which can come from prednisone. Now, I am 73 years old but I know that some of these issues have been kicked up by the prednisone. The thing is that I get in such bad shape lately that they need to kick up my prednisone so that my quality of life is better.
Soooo, the bottom line is to try and do the every other dosage schedule as that is a very workable method with less side effects. If one is on the prednisone every day then every other day do a taper on that 10 mgm until you are totally off of the drug and still taking it 10 mgm every other day. If you taper off slowly your body can adapt and not have as many aches and pains, etc and adjust better.
Just some info for the rest of you regarding my experiences. Irish
Thx Irish,
I really don't won't to be on prednisone for a long time but that seems to be how they treat Sj?gren's over here with plaquenil not being available for use with Sj?gren's. I'll def speak to my doctor about the every other day if he wants to keep me on it. In the meantime I'm trying to get plaquenil from over seas and find a dr that will help me when I start. I didn't really have that many aches and pains when I started prednisone so I'm hoping they don't hit me if and when I get off it.
GgcJap
I think most of us in same boat. The steriods are bad for us, and we cant seem to tolerate the other meds..then what?
Ive been trying to find something over the last 20 years and cant.
10mg a day is nothing really. I didnt notice any big changes until I took the 4mg of medrol. I felt better, but paying the price now
with side effects.
Gursie
Hi Gurs,
I'm not sure if the steroids are helping or not at the moment. Sometimes I feel I have a little saliva and then others one at all. I don't know if it's the prednisone but I will go a full 3 weeks to find out. Haven't had any side effects as of now so just have to wait and see.
I did notice that you have candida in your signature, is it treatable and if so how are you treating it? How do you know if you have it? Does it come with the Leaky gut I've been reading so much about?
Thx GgcJap
I hate to mention it but I have been on Steroids for so many years and I have seen no difference in the amount of saliva that I have. I have been on the IVIG for 10 years also and I don't seem to see much difference in my sjogrens either. In fact I think the sjogrens is getting worse slowly. Such is life. Autoimmune comes and goes as in it gets worse and then improves some for awhile. Life is never dull with autoimmune. Irish
Thx Irish,
I have had a very small increase(or at least not a decrease) in saliva since starting the steriods. I only notice at the end of my salagen though. I know it sounds funny but the salagen length and amount of saliva is getting less(I think) and after about 5~8hours I notice a slight increase. Im beginning to think it might have something to do with my stomach? not absorbing, late absorbtion? or the swelling in my glands has come down a little, even though I look in the mirror and dont see any swelling? IDK to be honest but I hope the increase continues.
Your definately right there Irish, life is never dull. Always something to think about. I can see that it could become life consuming if I let it.
GgcJap
So many things can contribute to the saliva gland and dryness etc. Thats part of the disease. I can have saliva in the morning, and two hours later be so dry..certain things can also cause more dryness. Medications, allergies to anything..hard to figure out. I dont think you can rely on steriods to try and get more moisture. I was on 10mg a day of prednisone for years without any side effects. Anything over that amount, you may notice some changes.
hope you can find some relief. My dry mouth and eyes are extremely bad with the fall allergies kicking in. Im miserable. I tried taking more steriods, but really no change.
Gursie
I have only taken the Prednisone for dryness of my eyes in eye drop from, which had become quite acqute. It took approximately 3 months; it was a gradual process, and then I was quasi normal. He then switched me to another drug, I can't remember which one that was. However gradually I returned to normal, and now only use intermittent Restasis and eye drops. For my dry mouth, I found that it was dental. I had constant infections, acute dry mouth, sinusitus, little or no saliva. My regular HMO doctor at Advocate Healthcare in Oak Park, IL, Dr. SenSeng who had diagnosed me with Sjogrens after 20 years of being treated for everything else under the sun. Dr. SenSeng, authorized me to have dental implants, under my HMO. He referred me to a Oral-Maxcillary Surgeon. All of my teeth were removed and replaced by dental implants, and there was no cost to me, as Sjogren's is a medical problem. My Surgeon told me it was the 1st time since he has been in practice in the past 20 years that anyone has been given 100% authorized treatment and payment for dental implants. God was with me sending me to Dr. SenSeng, and Advocate Healthcare.
Hi shebelle,
I have never heard of prednisone in drop form. Glad to hear that it worked though. Did your mouth recover after getting the implants? No charge to you sounds great! One of the very few I bet.
GgcJap
Shebelle,
How in the heck did you get implants covered? did they send it through your medical then? If so, may I ask what health care
plan you have? sure alot of us curious to know. Im not a candidate for implants, but I barely have any teeth left, and cant keep spending thousands on the teeth I do have.
Ggcjap,
Yes, I have systemic candida. Ive had it for years and it got very bad where it was in my esophagus. My doc has me on 100mg of diflucan daily and I also take nystatin oral powder, along with tons of probiotics and some other yeast fighting supplements.
I still get yeast, but it seems to be manageable.
gursie
Hi gurs, sorry to hear about your candida, I'm guessing it's not as easy to get rid of as the diet ppl would have us believe. I've seen the diet in my travels and sometimes wonder if I too have it. I'm also worried I have leaky gut and have heard that if you have leaky gut then you def have candida. Don't k ow how much truth there is in that though? Is there a standard test I can have to find out if I have candida?
GgcJap
I think alot of us with SS have candida issues...My doc can run some blood work to see if its active infection or not, and if I see more thrush in my mouth and my stomach is more upset than normal, I chalk it up to more yeast.
Sure the leaky gut goes hand in hand with all of it. I think my stomach is my biggest complaint out of everything.
I have gastroparesis so it makes it even harder. Nothing wants to move or digest. Ive tried so many things. One thing I can
say is I take tons of different digestive enzymes that seem to help.
Gursie
Hi gurs,
I might ask my dr about tests for candida next time I see him. I've have rashes that come and go, rumbling stomach and very slow bowel movement. What used to be everyday is now every three or four days. Sometimes I have to use laxitives.
I think the AI diet has helped with my stomach somewhat but it's far from good. Gastroparesis doesn't sound too good at all. I would also like to try digestive enzymes. I've read a lot of good things about them. Are they OTC or rx?
GgcJap
Make sure your not eating too much fiber. It can really be binding. You can find a good digestive enzyme at your local health food store.
I take around 5 different ones...about 30 minutes before eating.
You might also ask the health food store about a candida/yeast supplement. There are several. I take one made by NOW
called Candida Clear.
Good luck
Gursie
Hi gurs,
I was taking fiber supplements until about 4 days ago, good thing I stopped I think. I'm yet to find a good health food store in Japan but that's my goal for this week end. I'll see if I can find at least one digestive enzyme. I might be able to get the candida supplements online. A lot of the supplements I use now are made by Now. I haven't tried too many but hey seem to be ok.
Thanks for the help gursie it's much appreciated.
GgcJap
NOW also makes some digestive enzymes. I order alot of my supplements online via Iherb..
Hope you can find something that works for you.
Gursie
Thx gurs, I'll have a look.
GgcJap
Hi GgcJap,
Wondering if the Prednisone 10mg has had any beneficial effect on you yet.
I was in the same situation taking 10mg with no effect and decided to stop it after a week of disappointment, but do wonder if it can actually "kick in" after taking it awhile.
Five days of 10 mgm of prednisone will not do much of anything. The 10 mgm everyday has to be taken for a longer period of time to show any improvement. The prednisone given for a 5 days dose is usually 40 mgm or so--5 days and then done. This can show some improvement in an improvement in some inflammatory issue that is not too in depth.
It is hard to tell what works and when as there are so many ways to take it and for so many different reasons. Three weeks of 10 mgm is not going to cause much of anything for most people. It is the longer term use that brings the side effects. The one thing to do is to always take the prednisone with food in order to protect the lining of the stomach. Also, watching for improvement on a daily basis will drive a person up a wall. One needs to wait until more time has passed as the issues with autoimmune disease can change from one hour to the next. Good luck all. Irish
Hi Sharon,
As I had no aches and pains to start with I don't ha e anything to go off except my dryness. It seems to very slightly be getting better. Yesterday I only used 3 salagen(as opposed to my 5~7) one when I woke and one before sleep and one during sleep. I only woke once last night to put in eye drops(usually 3 or 4 times) I'm finding I have a very very little bit of saliva during the day, which I didn't before, not enough to spit but my mouth is wet. when taking salagen it hasn't increased though.(Salagen hasnt been working for me like it did when I first started taking it) Can't if it's due to rest(was my day off yesterday) the food I'm eating or the medicine or supplements. I'm at work today and it seems a little bit dryer than yesterday. Have to wait at least the 3 full weeks before really k owing I guess.
Hi Irish,
I think that's the doctors plan to keep me on it longer than the 3weeks. I can't tell at this point if it's had an effect or not but my dryness at the very end of salagen, or after it wears off is slightly, oh so slightly better. But like everyone says it goes up and down so can't tell yet.
I ordered my plaquenil yesterday so hopefully that does something eventually too.
I'm taking all medications with food and trying not to overthink things, sometimes easier said than done. Patience is a virtue.
GgcJap