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Continuing, stopping Prednisone 10mg

Started by GgcJap, October 27, 2016, 03:51:21 PM

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GgcJap

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
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

irish

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.

GgcJap

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 :)
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

ohiolady

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

SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

GgcJap

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
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

Tharrell

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!
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan's syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,omeprazole, mexiletin

GgcJap

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
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

irish

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

GgcJap

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
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

gurs

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
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

GgcJap

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
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

irish

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

GgcJap

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
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

gurs

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
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

shebelle

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.