Low Dose Prednisone

[Sharon]

To all of you on low-dose Prednisone (5mg or less):
What side effects do you get?
How do you deal with the side effect of skin thinning it supposedly causes even at low doses?

I'm beginning to consider getting on it, especially for my multiple chemical sensitivities and fatigue.

[JoanElizabeth]

I am currently on a dose of 10 mg but was on a dose of 2mg a day for a few months. On the 2mg dose I had virtually no side effects, on the 10mg I have mild mood swings, increase appetite (although that may be because it is helping my gastroparesis), and I had some trouble sleeping before my body adjusted. I have never noticed any skin thinning and have been on it consistently since October (although my dose has gone up and down)

[Sharon]

Thanks for the input JoanElizabeth,
Are there any symptoms the Prednisone didn't help with?
And may I ask your age?

[Carolina]

Dear Sharon,

I'm on low dose methylprednisolone (Medrol), 2.5 mg/daily.  And I have been on this dose for 2.5 years.

I take this dose to suppress the flare state that results from the IVIG I take monthly for my Primary Immune Deficiency.

I am deficient in IgG and IgM.  My deficiency causes me to be sick constantly, and with IVIG I am infection free.

At 74 my skin was already a bit thin, but it isn't worse with this dose of Medrol.

It also helps with the pain of my osteoarthritis, which is a blessing.

My doctor was very reluctant to prescribe a low dose on a daily basis, but I insisted.  It is necessary for my IVIG and sense of well being (such as it is right now with my spine problem! It is INDEED always something!).

Keep us posted, Sharon,

Hugs,  Elaine

[JoanElizabeth]

There are no symptoms I can think of besides my mild dry mouth that prednisone hasn't helped with. Most of my SS symptoms are neurological and musculo-skeletal, I have mild to no sicca symptoms. I am 20 years old

[Sharon]

Thanks for sharing your experiences gals,
every bit of information helps make an informed decision.
"Specialists" have managed to completely confuse me with some telling me Prednisone is my only real option
and others telling me I shouldn't dare get on it because it will only lead to me crashing when I eventually need to get off it or that it will cause me worse complications than I currently have.
Not an easy decision to make. 

[trc1962]

Right now I am on a high dose 35 mg and I do notice the thin skin and bruising. However, on doses below 5 mg I did not notice anything at all. I have quite a moon face right now (sigh) but under 5 mg it did not show up at all. If 2.5 mg makes you feel better I would take it and see how it goes. I oh so slowly weaned off the stuff but when you get below 5 it isn't too hard.

[Sharon]

Thanks trc1962 How long were you on it on high dose before the symptoms showed up
and how long did you remain on the under-5mg dose?
And...age?

[JoanElizabeth]

I can definitely attest to the "crash." When I was put on prednisone in October I was on a 30mg burst for joint inflammation which went straight to a taper. I was then put pack on 10mg to help my joints while waiting for Enbel to help (it never did). This was when I was diagnosed with enthensitis as my main rheumatology diagnosis. I tried to tell my doctors that the steriods helped my autonomic nervous system issues, I was keeping almost 1000 calories a day down which was incredible for me. However no one took me seriously and as we weened the pednisone my gastroparesis flare again and became worse than it was to begin with landing me in the hospital for 3 weeks. I never got lowe than 2mg for a variety of reasons. After I was diagnoses with Sjogren's it was confirmed the prednisone really was helping my gastroparesis and POTS and I am back on 10mg. I was also put on Imuran at the same time in the hopes of that working well enough to wean off of the pednisone.

Overall I have a love hate relationship with prednisone. The long term side effects are not good. When I got a bloodstream infection my body did not respond properly due to the long term steroid use and I have to be given an IV stress dose. I am not considered steriod dependent and need to carry around an emergency shot of hydrocortisone On the plus side without it I do not think I would have made it through my junior year of college and I definitely would not be able to handle my full time summer job.

I would not say you need to avoid the medication at all cost but I would be wary of any doctor that says ifs your only option. You should look for the happy medium. Prednisone is a good tool because it works so quickly and reliably but should be reserved for bad flares and as a treatment bridge (for example my doctor is currently using it as a bridge until the imran starts to work since that is a slow acting medication)

[Sharon]

Great that it also helps the GI issues!
Glad it has helped you so much.  How about fatigue issues?
Since I can't tolerate other meds that rheumy decided Prednisone was the only way to go.

[gurs]

I was on 10mg a day for about 10 years. I didn't have any side effects. Then, I had to add Medrol 6mg, and all the side effects came. I guess under 10mg is pretty safe as they say. Also, Medrol is a bit stronger than prednisone, so we have to keep that into consideration.

Gursie

[cccourt1942]

Hi,
  Before I start this, let me say what I think we are discussing...you and me that is:
You:
Age:  about 35 - 40
DX:  SjS (primary complaint)
Meds: none as you are sensitive to all of them
Supplements:  several with which you have been satisfied and successful
Complaints: Dryness of oral cavity and eyes
Current Complaint: Generalized aches and stiffness
Discussion for LDP

Me:
Age:  74
DX: SJS, hashimotos, psoriasis, and a myriad of aches related to SjS, old age, and old accidents
Meds:  pilocarpine, Restasis, Plaquenil, and numerous supplements  AND LDP (currently at 3 mg per day)

My rheumy started me on LDP to get me off Celebrex.  I had suffered an NSAID ulcer many years ago...so she insisted I couldn't stay on Celebrex.  btw:  It worked.  It was a few months before my 73rd b'day.  She started me on 5 mg.  After a year I felt well...I did have another health condition crop up in here ...had problems with regulating the med for that...but was told here not to discuss illnesses which are not related to SjS.  So...back to the after a year on ldp, my wonderful rheumy moved to a teaching hospital in Seattle.  I almost moved with her.  Her partner took over my "body".  First rattle out of the box was to decrease the ldp.  If I had working lacrimal glands, I would have cried.  So down to 4, down to 3, down to 2..and all heck broke loose in my body.  Had a prednisone burst for severe costochondritis attack (along with two ER visits)  along with two sialadenitis attacks and was put on 5 again.  Then 4, then 3...and I am there right now. (that started 8 months ago)  Saw her last week..and she was THRILLED I was still at 3.  Main reason was that she allowed me to take 5 mg daily while on a recent vacation for a week.  I told her I was going to try for 2 while it's warm.  SHE SAID she would be happy if I would maintain at 3..but would be thrilled at 2.  FIRST time we were in complete agreement.

Now then....for years I was treated for sinus infections with Medrol packs.  My GP who treated me from about 45 to 65 would ONLY do Medrol twice yearly.  He continuously told me I would need it "when I get old."  Guess what?  I'm there.

If you are as young as I believe you are, I would be anxious to get my daily dose as low as you can go after you get your body back to working "normally" ...whatever that is!  I would urge you to keep the use of it as low as you can go.  You have a lot of years to go before you are my age. 

As to side effects, none for what you are asking about.  My body, etc, that is.  No hunger, no gaining weight...actually..lost weight the first year.  No swelling, etc.  I still have good days and bad days, but I can usually ascribe bad to something other than SjS or meds, etc.  Old age to be truthful.  You can tire yourself out easily when you are older.  I do wonder about stomach upsets at times, but since the same stomach problems existed for decades before ldp, I can't blame it on it. 

The one thing I can tell you is I can still have "kinks" in my body (sore shoulder, aching side, low back pain, etc) on the ldp. That stuff is just normal wear and tear..and old age.  I mean, when my rheumy is checking me out..let's say my knees, she always comments about how they feel good for my age.  Well, as long as I don't need knee replacement, I just think of my sore knees as normal wear and tear.  I can walk, but not run, I can bend down , but not jump up...you get what I mean.  I deal with it and am thankful I am still up and about and can operate on my own.  VERY thankful. 

So good luck..and hope I didn't overdo my reply. 
Sjoldier c3

[CarlaJ]

Hi everyone,

I'm taking 5mg prednisone every other day.  I've tapered from 20mg everyday in February to where I am now.  I did experience weight gain at the higher dose.  I also take 20mg methotrexate once a week.  So far so good.

I do have skin thinning at this dose level.  I stumble into a chair and the skin on my arm peels off and takes forever to heal.  It's a small price to pay, I need to slow down I think.

When I tapered from 7.5mg E.O.D. to my current 5mg E.O.D., I experienced a lot of pain for about 4 weeks.  The past 3 weeks I've been fine again.  I will try to move to 2.5mg every other day Oct 1 and see how it goes.  My rheumatologist is good, I'm lucky there, and I'll be seeing him again Nov 1 to report on how I'm doing.

I'm very sad when I read how difficult this disease is for some to live with.  Before taking the meds, I could barely move after 4PM.  I know there's a good chance my disease will progress, so I'm trying to enjoy doing everything I can for now. 

Wishing everyone a good day - Carla

[Sharon]

Hi C3, thanks for your detailed reply!
You were mostly correct in your assessment of my situation:
I'm 40, supplements have helped me with some things but far from all.
My current complaint is actually mostly allergic reactions or hypersensitivities to just about everything, GI issues and the general feeling of malaise and fatigue. I most likely have an additional diagnosis of MCAD.

I've been putting off steroids for a long time now but am reaching my wits end and desperately want my life back already! Yes, one of my main concerns is how the steroids will affect my appearance since that will affect my work and confidence.

Your response was helpful, thank you, but could you please explain what exactly is "LPD"?

[Sharon]

Thanks gurs, that's interesting...I had read that only under 5mg is considered more or less "safe".
Good to hear you fared well on 10mg for so many years.