Re: I-V Steroids?

[Guest guest]

,

I had this style of treatment right back at the start when I first got

diagnosed. In fact, I had 3 rounds of 3xIV steroids overall. It did help me and

to this day, nothing has given me as much relief as that.

Unfortunately for me, the side effects of all the steroids meant that I couldn't

continue to have this type of treatment but I'd recomment it any day for a quick

relief of symptoms!

Be aware of weight gain....it is quite rapid (but does go eventually) and an

inability to sleep....it really revs you up! I remember being up baking

cakes/ironing etc at stupid hours of the morning because I was over alert!! It

was amazing that I could do either of those things though...let alone at 3am!!

Hope it goes well for you. It certainly sounds like a good treatment plan to me

with a follow up of kineret. I now take that and, touch wood, I'm doing ok with

that in combination with the MTX.

Keep us posted on how you do.

Take care

Kate uk

I-V Steroids?

Hey gang,

After losing the insurance war over the new biologics, my rheumy thinks we

should try three rounds of I-V Steroids (Solumedrol?--which I think is

prednisolone?). I think he said 1000 mg. by infusion every three weeks for 12

weeks... Has anyone else had this? We're hoping this aggressive approach will at

least knock me into remission, then the MTX and Kineret will just keep me there.

I'm willing to try--I'm just optimistically imagining walking on the beach this

summer and maybe even riding my boogie board again!

in Maine

[Guest guest]

Hi karen, In the beginning I was put in the Univ. of Michigan because the head

Rheumy thought I had RA.I could barely walk and I was actually sitting on the

exam table crying!It was also found that I had a blood clot in my right

lung!They put me on 4,000 mg. of prendisone by IV,1,000 mg per day.I gained 40

pounds in 4 days!That was how my body reacted.My advice to you is to ask them to

put a pain killer in the IV bag.I thought my arm was going to fall off and

didn't find out they could do that until my doc walked in during my third

bag!This was my experience and I wanted to share with you and give you my

experience.Good Luck and I hoping this will help you.

love Elly

I'm willing to try--I'm just optimistically imagining walking on the beach this

summer and maybe even riding my boogie board again!

in Maine

[Guest guest]

Thanks Kate & Elly. I've been on Kineret, MTX, and oral prednisone for four

years now but the only real remission I had was during the first 8 weeks of

taking Kineret. My rheumy's thought is that the I-V steroids will " jump start "

a remission so the other drugs can just maintain it. From what you both wrote,

sounds like that's what your doctors did for you way back in the beginning. I'm

not so worried about the weight gain... after 5 1/2 years of being on pred, I'm

already super-sized!

>

>

> ,

>

> I had this style of treatment right back at the start when I first got

diagnosed. In fact, I had 3 rounds of 3xIV steroids overall. It did help me and

to this day, nothing has given me as much relief as that.

>

> Unfortunately for me, the side effects of all the steroids meant that I

couldn't continue to have this type of treatment but I'd recomment it any day

for a quick relief of symptoms!

>

> Be aware of weight gain....it is quite rapid (but does go eventually) and an

inability to sleep....it really revs you up! I remember being up baking

cakes/ironing etc at stupid hours of the morning because I was over alert!! It

was amazing that I could do either of those things though...let alone at 3am!!

>

> Hope it goes well for you. It certainly sounds like a good treatment plan to

me with a follow up of kineret. I now take that and, touch wood, I'm doing ok

with that in combination with the MTX.

>

> Keep us posted on how you do.

>

> Take care

> Kate uk

>

>

>

[Guest guest]

Been there, done that, too. [g] This was a very common treatment for many AI

diseases before the biologicals came along. Back when the docs thought I had

lupus, I got this REGULARLY. And poor lupus patients continue to get this since

there are no biologicals for them as of yet. Let me say (as others have said),

this has MANY side effects. Bring lemon drops because your mouth will taste

like copper pennies from the IV.

You also will have weight gain (as others have noted), mood swings, blood sugar

drops (suddenly), maybe a little mania (I used to paint my bedroom after an

infusion), easy bruising. And long term it can thin your bones, increase your

risk of heart disease. Is it any wonder that everyone prefers the biologicals?

Forgive me for being absent minded, but did you try the OTHER biologicals like

Kineret, Enbrel, Arava, etc.? Insurance companies are always behind when it

comes to approving new treatments. But if yoru doc goes to bat for you and says

that you have FAILED ALL THESE OTHER DRUGS, the insurance company WILL pay for a

treatment that has been shown to work. Like SSDI, they are set up to turn down

as many people as possible from using expensive treatments. So fight for the

biologicals because the side effects of 1 gram Solumedrol X 3 days are serious.

That's why docs rarely do this any more unless you've failed everything else.

Honestly, as someone who has been through this, the little relief I got from

this was nothing compared to the problems caused by this regimen.

[Guest guest]

and others,

That treatment is also known as " Steroid Pulse " . Sometimes it is actually done

in the hospital with 1000mg every day for 2-3 days. As discussed, it is kind of

an attempt to jusmpstart things. It is also used for idiopathic

thrombocytopenia (low platelets do to unknown causes, but may be AI related.

I got it for my very low platelets and it did jumpstart the platelets which now

run low normal to just below. It did help the AOSD symptoms at the time, but

only until the levels tapered off. Did not jump start rest of AOSD, dang it.

Solumedrol is kind of a long lasting corticosteroids. Whenever I have a major

flare that requires admission, I get 125mg of solumedrol 3 times a day until

stable, but then have to taper all over again as at discharge the pill

prednisone gets increased to balance against the dropping Solumedrol.

That 1000mg dose really hits you with corticosteroid symptoms. Flushing etc. I

think I glowed in the dark the afternoon after each treatment. Mine was times 2

over a 2 month period.

Tom from PA

>

> Hey gang,

> After losing the insurance war over the new biologics, my rheumy thinks we

should try three rounds of I-V Steroids (Solumedrol?--which I think is

prednisolone?). I think he said 1000 mg. by infusion every three weeks for 12

weeks...

[Guest guest]

Has your doc tried Arava WITH the Kineret? I've had success with that working

after the Kineret by itself stopped doing a great job. I actually haven't heard

anyone on this list mention Arava, but it's an oral drug. I was initially put

on it by itself after I failed on Enbrel. Now I'm getting it with Kineret. I

don't see to have any side effectsfrom it and it's worked to extend te

usefulness of the Kineret.

[Guest guest]

OH---good tip! I'll call my rheumy on Monday and ask him about this. Thanks,

.

>

>

> Has your doc tried Arava WITH the Kineret? I've had success with that working

after the Kineret by itself stopped doing a great job. I actually haven't heard

anyone on this list mention Arava, but it's an oral drug. I was initially put

on it by itself after I failed on Enbrel. Now I'm getting it with Kineret. I

don't see to have any side effectsfrom it and it's worked to extend te

usefulness of the Kineret.

>

>

>

[Guest guest]

To add a good note on the solumedrol 'pulsing'. My little niece contracted

dermatomyacytis at the age of 4. It is an autoimmune disease that affects the

skin and muscles. (Normally older people get it, while normally younger people

get our disease...weird huh). Anyway, she went on pulsing 3 times a week. A

home health care nurse came to her home and administered it to her.

She hated it, made her feel a sick after it was done...but now..after 4 years,

she is finally in remission. (It's another one that cannot be declared cured)

She takes no other drugs now (was on MTX)...lost all of that prednisone weight

(she was round as a grape, but being a little kid she was still darling) has

mostly caught up on her growing..sharp as a tack...and can pretty much do

anything other kids can do. we have to watch that she doesn't get overheated

and that her sunlight time is limited. Other than that she's good!

Sorry to make this so long...but it seems to me that the pulsing certainly does

work!

I wish you luck!

in Tx

Re: I-V Steroids?

and others,

That treatment is also known as " Steroid Pulse " . Sometimes it is actually done

in the hospital with 1000mg every day for 2-3 days. As discussed, it is kind of

an attempt to jusmpstart things. It is also used for idiopathic thrombocytopenia

(low platelets do to unknown causes, but may be AI related.

I got it for my very low platelets and it did jumpstart the platelets which

now run low normal to just below. It did help the AOSD symptoms at the time, but

only until the levels tapered off. Did not jump start rest of AOSD, dang it.

Solumedrol is kind of a long lasting corticosteroids. Whenever I have a major

flare that requires admission, I get 125mg of solumedrol 3 times a day until

stable, but then have to taper all over again as at discharge the pill

prednisone gets increased to balance against the dropping Solumedrol.

That 1000mg dose really hits you with corticosteroid symptoms. Flushing etc. I

think I glowed in the dark the afternoon after each treatment. Mine was times 2

over a 2 month period.

Tom from PA

--- In Stillsdisease , " "