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Re: Rheumy visit

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Sharon, I know how depressing it can be to watch your meds go the WRONG way.

Just try to be patient and know that they WILL kick in soon and you will have

won the battle.

YOu just keep whinning as much as you want. That's what we are all here for.

I'm keeping you in my prayers and hopefully you will be starting down on the

meds.

hugs

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--- RCColloran@... wrote:

The increase in meds is depressing and along with the

situation with my daughter right now, and not feeling

great I am just struggling. At least we get to go see

our grandchildren tomorrow, so that will be the best

medicine for me!

I know I just get too impatient to get off meds. I am

thankful that these medications are available and

should just let it go at that.

Thanks for the good thoughts. Love, Sharon

> Sharon, I know how depressing it can be to watch

> your meds go the WRONG way.

> Just try to be patient and know that they WILL kick

> in soon and you will have

> won the battle.

>

> YOu just keep whinning as much as you want. That's

> what we are all here for.

>

>

> I'm keeping you in my prayers and hopefully you will

> be starting down on the

> meds.

>

> hugs

>

>

=====

__________________________________________________

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  • 1 month later...
Guest guest

Dear Squeek, I'm sorry to hear that you have to up your Pred, but glad that

you are going to stop the flare. Hopefully it will kick in and you won't

have to up it any more. I'm glad that you asked for a PFT.

I will be keeping you in my thoughts and prayers and hope that the new dose

of Remicade has no ill effects.

Let us know.

hugs

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Squeek, this is the most frustrating disease, isn't it? I too keep dancing with pred. Each time I get off it, something else happens, and I'm right back dancing again. When I first went on pred, the group used to tell me it was a wonder drug, we all wonder why we are on it! Hang in there and I hope you feel better. Love, Judy Rheumy visit Hi all,Went in to see my rheumy today and wanted to touchbase and let you all know how it went. First off, Iam not to lower the prednisone again until I see himin six weeks. In fact, I can raise it until my stupidears are more comfortable. Same old/same old. Askedwhy my ears are so bad again and he feels it isbecuase I am not getting enough Remicade yet. Stillthinks I produce an extra lot of TNF. So, he isupping it by another 200 mg. which will put me at 500mg. per infusion. I get my next infusion on the 12thof this month. After my last infusion of 300 mg. myblood pressure went down to 91/51, so I hope this isnot going to create another problem!I told him about losing two members last month andasked for a pulmonary function test. I've had someshortness of breath and can't even blow out a pillarcandle anymore without practically killing myself. Iam going to try and clear that with my PCP when I seehim on Thurs. If he has a problem with that, therheumy will handle it. Due to being in an HMO, theorder should come from my PCP.Anyway, he told me that if RP is affecting therespiratory tract it would be the inhalations that areweaker, not the exhalations. The way he explained itis that as the trachea becomes weak and floppy, whenyou breathe in it creates a negative pressure and thatis what causes the trachea to actually collapse. Hesaid that some people with connective tissue diseaseare short of breath because it can affect the lungsand there is nothing that can be done about that. Iam dx'd with mixed connective tissue disease also. Nota very encouraging appointment as far as I wasconcerned. It's the old prednisone dance...two stepsforward and three steps back. I asked if I would everget off of it and he still hopes that I can. At leastI am on a single digit dose, and I am happy aboutthat.My ears are still bad today and I may increase thepred again tomorrow. Just increased on Sunday tho'and want to give it a chance to get working.Hope everyone is doing well and that you have sunshineand blue skies where ever you are.Love, squeek=====__________________________________________________

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