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Sjogrens Topics => Living With Sjogren's => Topic started by: Kaylin on September 05, 2011, 10:34:22 PM

Title: New Rheumy and Prednisone.
Post by: Kaylin on September 05, 2011, 10:34:22 PM
Hello Everyone!

I finally found a rheumatologist that's a keeper.  He took my symptoms seriously and was surprised I wasn't on more than just plaquenil.  I left his office with scripts for gabapentin and a month taper type thing with prednisone.  I asked to try the pred in hopes that it would give me a little bit of a break from the pain and other symptoms.  He warned that it may not work and that I couldn't stay on it all the time.  I was fine with that, but now, I just don't think I can live without it.  I've been on it about 3 weeks now and I just about have my life back.  I am not tired all the time, almost no joint pain, just wow.  I'd say I'm about 75% of the way back to where I was before I got sick.  How can I give that up?  Before this, I couldn't even make it across the house some days and now I'm walking 1 -1.5 miles each evening.  It's been such a dramatic change. 

Not only physical, my state of mind is back to normal.  I think this disease does something to my head.  I used to wish I would just not wake up, I wanted to die.  That's all gone now.  It took about 2 days for it to work and it is a miracle.  I still have some symptoms, but things are just so much more manageable now.

The gabapentin doesn't seem to help.  My PN is the same and it made me really nauseous.  He said I could double the dose (from 200mg) but I don't think I could keep it down. 

So, now I'm stressed out.  I don't want to give this up, don't want to go back to what I was.  It's so nice to feel human and useful again.

Thanks for listening (reading)!
Title: Re: New Rheumy and Prednisone.
Post by: Jozee on September 05, 2011, 11:11:02 PM
Some people continue on low doses. Maybe when you see the doc again and tell him how good you are doing he will change his mind.

Good Luck to you!
Title: Re: New Rheumy and Prednisone.
Post by: gurs on September 06, 2011, 04:14:06 AM
I would take whatever helps at this point. There arent many options for us regarding medications, and your quality of life is much
more important, I think anyways. He shouldnt have a problem with a low daily dose or something?

how much are you taking now?

Title: Re: New Rheumy and Prednisone.
Post by: tomsmom on September 06, 2011, 07:08:57 AM
Hopefully, your rheumy will allow you to stay on the prednisone at a low dosage a while longer to try to keep your symptoms at bay. 
I agree wholeheartedly with Gursie-- quality of life is important.

Do you have any preexisting conditions like hypertension, diabetes, or osteoporosis that could be worsened by long term steroid use?  Since these conditions could occur from long term steroid use, doctors are extremely cautious in giving steroids to people who already have these issues.
I love reading that you're feeling so good.  I hope it continues. 
Title: Re: New Rheumy and Prednisone.
Post by: Skylar on September 06, 2011, 07:23:47 AM
I know exactly how you feel, I went through the same thing and my Rheumatologist refused to extend the prescription too. I went from not being able to get up out of a chair and walking a few steps to being able to walk 2 miles with little pain. And as I tapered off, everything came back. My doctors refused to put me back on because of the dangers of long time use. The side effects of long term use are scary and significant risky and has to be balanced against the benefits.

A couple of months later I discovered a diet that is anti-inflammatory - Dr. John McDougall's diet and in a few months I felt normal again - everything went into remission just be eating healthier foods. Unfortunately the Standard American Diet that most of us eat is pro-inflammatory.

I hope when you finish your taper that your symptoms don't return, or if they do they will be milder and easier to cope with.
Title: Re: New Rheumy and Prednisone.
Post by: Kaylin on September 06, 2011, 08:10:08 AM
@Jozee   I hope he does! Thank you.

@Gurs  I am currently taking 2 - 5 mg tablets a day.  One in the morning and one in the evening.  At the beginning I was taking 3 a day.  I can tell a slight difference being on less, but it's still good.

@Tomsmom  I don't have any of those conditions, thankfully.  The only things it hasn't helped are the skin problems (poss. scleroderma), the bowel issues (poss ibs), and the neuro issues (PN, brain fog).  Heh, now that I think about it, I guess it didn't take everything away, but it's sure doing something.  I think the biggies are my state of mind is back to normal and my joint pain is almost gone.  I get morning stiffness and pain if I push too hard, but it's very tolerable and I learned long ago not to push.

@Skylar  You are right on the mark with diet.  I started keeping track of what I eat and yuck!  I have a horrible diet.  I will look into the diet you mentioned.  I have just been trying to cut out the processed foods and eat veggies and some fruit everyday.  It's going to take time to change my lifetime habits, but I'm working on it.  Oh, and the darn soda.  I've cut that in half so far, but it needs to go.  I never realized how that added up.  A couple weeks ago, when I started keeping track, there were days when I'd have over 1100 calories a day from soda alone. Ugh.

Thank you all!  I hope he will let me stay on the pred, at least another month or 2 so I can try the lifestyle changes.  I will let you know what happens. :)
Title: Re: New Rheumy and Prednisone.
Post by: gurs on September 06, 2011, 09:37:35 AM
I was on 10mg of pred for over 10 years, and had no side effects. Then, after a bad reaction to IVIG, doc gave me some medrol and I felt
soooo much better adding that. The doc let me stay on the 8mg of that a day, and I was doing good for around 6 months when all the side effects started..moon face, losing more hair, etc.

Ive been trying to wean off of it for past year, but just cant. Too sick and not many options.

good luck to you though...I know you like your doc, but you can always see another one.

Title: Re: New Rheumy and Prednisone.
Post by: Patty on September 06, 2011, 09:26:16 PM
You sound just like me - I respond well to prednisone too. I have been on it 6 years, taking between 6-15 mg except for several weeks when I had to go up to 60 mg. That said, I am now paying a price for it with bone loss, cataracts, weight gain, high cholesterol, severe GERD etc. and I am not yet 50 years old, so be careful. I would see if your doctor thinks there is an immunosuppresant drug you can try while you are still on the prednisone. You could then try to taper the prednisone when you have been on the new drug long enough for it to be effective. Meds are trial and error and what works for one person may not work for another, but it is worth checking into. Take care.
Title: Re: New Rheumy and Prednisone.
Post by: 12lovehim on September 06, 2011, 11:38:57 PM
I so get the prednisone... When I first started taking it.. I called it the Medicine from God.. But 2 5mg a day caused hair loss, moon face bloating.. and well I am now being told I have Optic Neuritis.. and my DR said.. You might feel great.. but if you don't want to add meds to combat the side effects of the pred, get off it now.. And boy did I have a few days of heck when I went off of it.. ( and that was last week.. ) My mood swings were really bad.. So I really understand.. my pain is back, and joint swelling too..

So good luck love.. hope you have better luck.. (oh my dr said it can change the actually structure of my bones and face.)

Title: Re: New Rheumy and Prednisone.
Post by: irish on September 07, 2011, 09:58:33 AM
I don't know how long you have been on the plaquenil, but if you just started it you might want to talk to the doc about a low dose of pred until the plaquenil kicks in.

I take prednisone 10 mgm every other day and have for 6 years. I became diabetic and I think I would have anyway as it runs in my family in a big way.

I take the pred for my myasthenia gravis and my neuro wants me on it to keep a hedge against any problems with breathing and muscle weakness. I don't have moon face nor have I gained weight or developed any other issues. My bones are still ok though on low normal range as far as osteoporosis goes.

You may need to consider that you might need one of the stronger drugs such as Cellcept or methotrexate to halt the autoimmune attack on your body. If you have been on the Plaquenil for many months and seen no improvement then you might need something stronger.

It really isn't good to take prednisone/steroids for a long period. My neuro says that 10 mgm every other day is has high as you can go before your start adding in the side effects. When you increase the dose and make the dose daily the side effects start kicking in.

I had to go to 20 mgm daily for 2 weeks and then down to 15 and now 10 mgm daily til I see her again because of my weakness and other issues from the heat this summer. I have started a little facial swelling and my blood sugars crept up some. Can't wait to go back to the every other day dose.

Please don't stay on the dose every day cause it will cause problems. When you have options with other medications it pays to use them. Also, have you been on an antidepressant?? Sometimes this helps with the way the brain acts and also makes life much more tolerable plus it can improve energy levels and help with pain.

There is another med that works better than gabapentin and is in the same family. It is called Lyrica and does well with the PN pain. It is more costly, but may well be worth it to you. Good luck. Irish ;D
Title: Re: New Rheumy and Prednisone.
Post by: BUNKIE09 on September 12, 2011, 08:10:05 AM
I started prednisone about 5 years ago. I have Sarccoidosis and SJS. I was at about 10Mg's a day and managed to get down to 3 and then had to go back up. What they never explained to me was that when you get a boost you can come right back down. Every time I got a boost they kept me higher for several months and then started a slow descend. In 07-09 I was satable at 4Mg's but had a lot of stress with parents passing away and ended up back at 6mg. I stayed there for the last year and now am trying to get back down to 4 at .5mg at at a time. I had no idea it would be so tuff to come down just .5Mg's. I have tremors, blood sugar and BP issues with them both low. I now get migraines and they are checking me for diabetes. I have a bone density this week because they suspect osteoporosis. I have leg cramps and have had chronic vertigo for 3 years. They have done every test and ttreatment in the world and can not find it. They suspect the steroids. So I am sorry that I stayed on the steroids this long. It did calm the Sarcoid and the SJS but wow it changed my life in other ways.
It is a powerful drug that does wonders when needed for a ton of ailments BUT be careful about long term usage. Kicking it is like crack probably. Jerry Lewis was not able to get off till he went into rehab inLV with several months of physical therapy and doctors around the clock. If I was rich I would do the same.   
Title: Re: New Rheumy and Prednisone.
Post by: Kaylin on September 12, 2011, 09:44:49 AM
Thank you all for sharing your experiences.  Everyone's stories help me feel like I'm not so lost in the dark.  I realize that everyone is affected differently by things, but it's a safe bet that staying on pred will probably not end well.  I want to throw a giant sized temper tantrum about it though...hehe.  I tried to make sure my kids understood that life isn't fair, but I never really took that lesson to heart, I guess.

I am still hopeful.  This is the first rhuemy to actually try to treat this disease and on the first visit, I walked away with something that actually helps.  I've also learned a lot.  Most of my worst symptoms seem to be inflammation related.  I missed a couple doses of the pred a few days ago and everything was back to the way it used to be.  So, I got a quick before/after kind of thing.  Maybe there is another medication without the long term damage that can reduce the inflammation?  Diet changes can't hurt either.  I've been eating more fresh veggies and less processed gunk.

I will be going back to the Dr. on the 22nd.  I will let you guys know what happens next. :)