Help... Balancing Meds???

Sorry, didn't mean to post that other one yet, I had a moment! Let's try this again.

I guess I'm wondering how everyone else got thru the process of getting on to the immunosuppressant, and weened off the prednisone.

Here I have been out of the hospital and off oxygen for almost 1 month to the day, I started taking Imuran exactly 1 month ago today on a 50 mg dose. My last appt with the rheumy was on the 16th of April, when I saw him I was doing okay (mild stomach aches) on the 50mg of Imuran and 20 mg of Prednisone with my twice daily advair. He doubled my dose of Imuran to 100 mg and sent me home to see how it went. The next day my pulmonologist told me I could quit taking the advair(which has addtl steroids in it), It made me very sleepy for abut 2 days, and then I started vomiting my morning meds which include pretty much everything except my supplements. I spent that weekend very sick and really sore.

The following Monday I saw my pulmonologist, she was not impressed with my breathing. I also took a chest x-ray which showed little to no improvement since the hospitalization. She put me back up to 60 mg of Prednisone and gave me some phenergan to help with the nausea.

A couple of days later I was keeping the meds down, finally. I went to get my CBC workups done last Friday, I don't know what they came back like, but I thought I'd get a chance to talk to my rheumy on Monday. Unfortunately I really apparently don't get to speak with him, but thru a nurse. He suggested because of the nausea that I fall back on the dose of Imuran to 75 mg to alleviate the nausea. I told him that my PCP had had me cut down the phenergan to a half dose and I stayed on the 100 mg. I'm afraid to go back because I don't want to go thru having to raise it again. I was supposed to move up to 150 mg on Tuesday, I don't know what the plan is now.

I also started my Prednisone (now down to 40mg) taper on Tuesday, and now today I woke up with some of my same old SOB, blood tinged sputum, and a serious lack of energy. I came home from work early because I couldn't even get my whole speel out on my phone calls because I'd run out of breath.

I feel like this cycle of lowering the prednisone and getting sick is never gonna end. This coming off the prednisone since I was first hospitalized is how I have ended up in the hospital twice more.

Does this crap ever end? I'm afraid to keep trying to reduce the Prednisone. It seems to be the key to my health right now. What are the bad side effects that they keep telling me there are?? Does anyone suffer from the bad side effects? I just seem to be jittery and anxious, I'll take that over not being able to breathe any day!

I went ahead and deleted the other post that you were not ready to post. If this ever happens in the future, note that all you have to do it click on the red X in the upper right hand of your post to delete it. Several people on here have been through the process of lowering pred while increasing something else. I haven't quite got to that point myself. It seems to be that the secret is to do it slowly and steadily, backing off for a bit if symptoms come back. Hopefully others will be along soon to share more information with you about their experiences with this.

Hi Averylynn.  I'm sorry you're so sick!  I was very healthy prior to SLE and my symptoms began with asthma, but so far advair and albuterol work. Re the pred, my internist was becoming more and more angry with my pred dependency because it raises my blood sugar and makes me eat too much.  I hated it because of my moon face.  So my rheumy started me on methotrexate 7 months ago.  I was only on 20mg of pred daily, but I sure had a rough time giving it up, so I decreased just a couple of mg every few days.  Finally I just bucked up and stopped the last few mg knowing I'd have a flare, which I did, but I refused to take the pred.  I couldn't have done it without the methotrexate.  During the last 6 weeks or so, I've been having more frequent, intense flares.  I'm still refusing to take pred daily so my rheumy has me on a 3 day taper of 30mg, 20mg, 10mg with each flare so I can continue to work.  Like Lynnwood said, be patient and decrease VERY slowly.  Health, meds and quality of life are quite a balancing act! Many hugs and positive energy to you Averylynn.

ohh averylynn,

 

WHat a time you are having hon!! big hug ((())) for you.

I have similar probs trying to cut my prednisone dose.  Like you, I end up in emerg, and twice right in hospital.  I have managed to stabalize at 10 mg, and being stubborn, I will once again try to wean myself off, hopefully with success...someday    At one time Averylynn, I was on 40 mg of prednisone..and over the course of 3 yrs..we have got me down to 10 mg, anything lower, I end up with that pericarditis, and Costochondritis(unconfirmed)

Maybe with all your respiratory problems, you might be a "prednione lifer" like some of the others here?  I am thinking that your pulmonologist and rheumy need to conference and see what the solution for you will be.  I think it's terrible what you are going through..and I will keep you in my prayers and hope you get some relief very soon.  Getting shortof breath just talking on the phone...reminds me of how I get with pericarditis when I try to go lower than 10 mg. It's very scary I know Take care hon, get some rest...and maybe tomorrow you can talk with one of your docs

 

Diane

Thanks so much for the suggestions you guys. I feel like I'm just having a hard time getting my doctors to communicate period. I feel like the middle man in the situation and I have enough on my mind than to take notes to share between the three of them. My poor pcp feels completely out of the loop, and the rheumy keeps mentioning he agreed to help the pulmonary clinic basically just with the meds part of it. I feel even worse as I get further into the day today. I'm taking my vistaril and vicodin for the first time in 2 weeks from my head hurting so bad today (I've been trying to avoid narcotics if at all possible). I have used my inhaler several times which is not typical either. I'm to the point where I just want to make the decision to take a much more gradual taper off the prednisone myself. I feel like at this point I know more than they do. I use research and the forum to get questions answered. Thank God for you guys right now. I'm gonna try and get some rest now. Thank you all again.

AveryLynn,

With my lung problems, I was up at 60 mg when I was last released from the hospital. My pulmonologist brought the dose down 5 mg every two weeks, but we quickly found out that caused the symptoms to return. It took a year to taper from 60 mg to 0. During that time, he started me on CellCept, and have been off steroids since November.

On another note, if you are having concerns on a daily/hourly basis about your breathing, have you considered purchasing your own pulse oximeter? It's a bit of an investment (I bought mine on eBay and got a good deal) but it is a good tool to chart your progress or alert you when things aren't going well. I don't go anywhere without it, as I can go from normal to a 75% O2 in a matter of hours. Sounds like your condition is more complicated and more serious than mine, and if it is a chronic condition you may want to ask your doctor his thoughts.

Good luck - our thoughts are with you.

Laura