Trying to go without steroids--injections worn off

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/14/2009 7:28 PM (GMT -7)   
Hi--
I'm trying to stick it out as long as I can before I get more steroids.  I'm a little worried about my heart. I went out today and was in my shed and did some sweeping and got really hot and sweaty fast and couldn't catchmy breath. I went in and laid down and it felt like my heart just couldn't catch up.  I feel so out of shape but on steroids I'm not like this at all. I don't knowif that is normal, to be so much better on steroids, or whether it is a sign I need to get back on them.
 
I'm trying to see what I'm like without them and to stretch out things. The spinal injections I got were expensive and painful and traumatic but I'm having problems off and on again.
 
The docs like me to try to not be on steroids all the time and I'm trying to make things last and givemy body time to  recover. I don't know if they will want me to do more injections or whether I can do pills. I have a biopsy of my lymph nodes and some gi stuff coming up, so I have to try to work the rheumie in around that and decide about another spine injection.  Any help would be appreciated. I'm a little scared about the heart thing sinceI've had damage before.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/14/2009 9:37 PM (GMT -7)   

Hi Marji, I think you better just take it easy and talk to your doctor. Like in the morning. I have been off of steroids since March. But I was in the hospital for a month while I was getting off of them. During that time they had a very hard time getting my blood pressure straightened around. It was consistantly 200/ 110 or something in that area. They had me on 3 different meds for my heart plus switched them around. I'm not saying that the steroids is what was doing it as I was really sick already. I have to be off of them to get on the transplant list but sometimes I get very upset not having them. I get more tired. My inflamation is worse. I'm sure that after being on them for so long my body is better off without them as far as the thinning bones and losing hair. They switched my meds to build up my bones but of course my antibiodies are going to start attacking me again. So they have me on strict ordered to get to the hospital at the first sign of a problem and they will give me a steroid burst. anyway that is how they are handleing me just the burst if I need it and no more.

Anyway I would suggest you stay away from the broom. I don't care if it is holloween. You are sick and you are going through this detox you don't need to be pushing yourself. Call your doctor. If you don't have a PB cuff go to a store and use theirs or stop by a fire department they will be happy to check you out. Like you said you already have heart problems you don't need anymore. nono .

Let us know what the dr. has to say. Personally I'd go for the firemen smilewinkgrin

love ya

carol



systemic sclerosis sine scleroderma,sleep apnea,Megaloblastic anemia
what ever that is.
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/15/2009 5:57 PM (GMT -7)   
Thanks Carol, its so good to hear from you. Its so hard because you know the steroids will give us some energy, brain power and some kind of life, but then we just keep getting sicker.

I need the broom! I feel like a crumpled up ole lady, withthe attitude to match. I hurt so bad in my neck. And flying beats walking. If only the broom worked like that, or like the one in Fantasia.

I got the news today that I will need a liver transplant down the road but I explained to the doc that I doubt I will be a candidate due to the multiple different problems I have. IT looks like he might help me push for a jejunal bypass, another way to fix my liver problem and hopefully slow, if not stop, progression. Finally, somebody who cares and knows his stuff and isn't afraid to get his hands dirty. I'm really happy. I don't know if I will qualify for that, but I still tolerate surgery well. And he will do some banding to stop my gi bleeds. So good things!
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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