Solu medrol

[navydad]

After suffering all weekend, svere cramping in the stomach, living on laxatives,, and more neuropathy,, I got a call from the rheummy today,, they want me to have 3 days of IV solumedrol IV,, 1000ml,, readin on the side effects, its kind of scary,, metal taste in mouth,, mood changes,, but he also said my Compliment levels were smacj dam in the middle where they should be,, and the blood work they toook two weeks ago showed no fungal growth,, I just dont understand whats goig on with my body,, I cant get warm,, cant go outside if its cold,, I start to shiver immediately,, but my stomach is prob the worst,, I have told them over and over its been slowing down,, now almost completely stopped,, except for some spasms of food going down,, its been a nightmare,, its like tehy wont listen to me,, hopefully this will help

[JannaLee]

I hope so much this new medicine therapy will knock out whatever is attacking you!

Thinking of you and wishing you to feel better!
Janna

[Scottietottie]

Hi navydad 

I hope this helps too. It's got to be worth trying! Trouble with tests is - they only find/don't find what they're testing for. If you have something that they didn't test for - it wouldn't show up.

Keep us posted as to how this treatment goes.

Take care - Scottie 

[lynnmarie219]

Hi navydad,


I'm so glad to hear that someone is at least listening to you and trying to help.....I hope and pray that this IV treatment will help to alleviate some of your symptoms. How soon do you start this?

Please let us know if this helps you to feel a little better.....you definitely deserve some relief!

[wednesday mc haggis]

navydad

truly hope this medication give you some relief, bear in mind side effects are possibly side effects, and doesnt mean that you will get them, hopefully not, keep us posted

t x

[KYMOM]

Navydad, Hope you can find meds that help.  For the cold, I have found that down vests help.  I wear one constantly inside and outside (even under my down coat) to stay warm.  Before the down vests I could never get warm. Roxanne

[irish]

navydad, Finally, a doc is trying to treat your autoimmune disease. This solu medrol for three days should help to calm down your symptoms. The medrol infusions are done frequently for people and usually gives some relief. I am thinking that the docs are listening to you but that they are frustrated and don't know where to start.

You have the immune deficiency that needs to be treated plus the autoimmune disease. I know that it is hard to understand but your body is literally turned against you. The cells in your immune system are trying to kill you off literally. They are misreading the signals your body gives and think that you are an invading infection, etc. So the immune/autoimmune system revs up and this makes all the symptoms happen.

I think that you get so frustrated and have a hard time trying to explain things to your doc. This happened to me and probably to many of us with autoimmune issues. The neuropathy that you have in your feet and legs can occur in your stomach and colon. This makes the colon either hyperactive or so slow that it hardly moves the food along.

THe high eosinophils can also be from the immune deficiency issues. It is possible that all that drainage that you are having from your sinuses could be the result of the high eosinophils. The drainage may slow down after the medrol infusions because the immune system issues will be slowed down and won't have the overproduction of the eosinophils. I am guess at this. I have had a very large amount of mucus for 10 years and buy about 10 boxes of Kleenex a week. It gets very old and really interferes with my life.

Talk to your doctors about doing the IVIG infusions again. There are several different products and if the first kind didn't work very well they can switch you to a different brand. Hopefully, you have a neurologist and immunologist who can get together and figure out what should be done. I have found that a rheumatologist isn't much help in these type of problems as they are more into the joints--arthritis, etc.

Good luck with the infusions and don't lose your cool if you should have a side effect. Most of the time we have to take the bad with the good. Just accept it for what it is and make sure to get treated. I would hope that one of your sons could help
you obtain treatment as it sounds like you could use a good advocate. You wife is probably overwhelmed by everything and has all she can cope with right now and isn't able to help you.  Let us know how things go and just hang in there for the treatment. Most people get along just fine. Irish

[SassieCat]

Wish I could take Irish with me when I go to the doctors, she says it in easy to understand English.   WoW!

Hope they find something that can allievate some of the misery for you.  Keep in there, miracles sometimes need more than a day.  Look at the world and babies.......

SassieCat

[harrigan]

Good luck on this new treatment Navydad.  Hope it solves a bunch of issues for you and side effects, if any, are worth it.  Still have you and your family in my thoughts.  Post when you can, Ailsa