Help... Balancing Meds???

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Regular Member

Date Joined Apr 2007
Total Posts : 43
   Posted 5/3/2007 4:04 PM (GMT -6)   
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!
Diagnosis:  Lupus Pneumonitis with Chronic Pulmonary Hemmorrhage and Anemia, Polycystic Ovarian Syndrome, Migraines  
Medications and Supplements:  60 mg Prednisone, 100 mg Imuran, 1800 mg Calcium w/ Vitamin D, 25 mg Prilosec, Iron pill 2x daily, albuterol inhaler, 50 mg visteral, 500/5 Vicoden, 25 mg Phenergan, Midrin, Imitrex

Regular Member

Date Joined Oct 2005
Total Posts : 251
   Posted 5/3/2007 5:01 PM (GMT -6)   

I'm sorry you have so much going on. sad    I don't really know that much about it, but I would say stick to the prednisone dosage until the Imuran has time to start working.  That could take a couple of months.  I know prednisone sucks.  The only way I was able to start getting off of it was when the MTX had been in my system for over 8 months......and it was still h$#% coming off of it.  I wish you the best of luck.

I see I have a fellow PCOS person too. :-)

Jeannie ~
   Mom to Ty (4 yrs old)
   and 3 Shelties
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 17.5mg (RA); Metanx 5mg (RA); Remicade (RA); Lunesta 2mg (as needed)

Forum Moderator

Date Joined May 2005
Total Posts : 6938
   Posted 5/3/2007 5:07 PM (GMT -6)   
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.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Regular Member

Date Joined Aug 2004
Total Posts : 233
   Posted 5/3/2007 5:29 PM (GMT -6)   
Well I have been on prednisone for 18 years and still dont see any sign of coming off it, the lowest dose i have got to is 8.5mg and that was a struggle since i have been on it so long. Now im currently on 12 mg pred but have given up thinking I will ever get off this drug.  The only major side effects ive had so far is osteporisis and I do get the jitters but I have xanax to help with this and when I am lowering my pred I can only cope with .5mg at a time otherwise my whole body become sore if I try anything higher.
take care

Forum Moderator

Date Joined Jun 2006
Total Posts : 1533
   Posted 5/3/2007 5:58 PM (GMT -6)   
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.

Dx: SLE with CNS complications, major depressive disorder, Sjogrens, fibromyalgia, asthma, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, prozac, lamectil, flexeril, celebrex, lisinopril, lipitor, nexeum, seroquel, advair, actos, arthritis tylenol 
supplements: multi vitamin, B complex, C, flaxseed oil
             Better living through chemistry :D    Donna

Regular Member

Date Joined Jan 2007
Total Posts : 279
   Posted 5/3/2007 5:58 PM (GMT -6)   
Hi AveryLynn,

I have not been on as high a dose of the prednisone as you currently are but I am taking both Imuran and prednisone. I have been on Imuran since Sept. and it is my lifesaver. But, it took at least three months, for me, to really kick in and make a big difference. I agree with Jeannie. I would think that you should not try to taper the prednisone until you have been on the Imuran for longer than the month you have been on it. I just sort of gradually felt better all fall. I actually started the Imuran and prednisone at the same time (new rhuemy was more agressive than the previous one who stuck with NSAIDS and Prilosec only until I could barely move then she thought she might try placquenil -- new rhuemy went right for Imuran).

Good luck. Let us know how it goes.

Stay Strong,
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)

Veteran Member

Date Joined Jan 2007
Total Posts : 1042
   Posted 5/3/2007 6:30 PM (GMT -6)   
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 eyes    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 sad Take care hon, get some rest...and maybe tomorrow you can talk with one of your docs
A/Fib, diagnosed Aug, 1997, R/A diagnosed in Sept. 1998, Pericarditis and Lupus in Dec, 2003, Diabetes, diagnosed march, 2004
sotalol, digoxin, coumidin, plaquenil, prednisone, metformin, diamacron, wellbutrin,fenofibrate
Courage is fear that has said it's prayers

Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 5/3/2007 9:21 PM (GMT -6)   

You have a very rare, unusual condition. Please check with your pulmonologist about all of your meds at this point. Is he/she aware of all of the other medications and dosages? Who is recommending that you taper the prednisone? Perhaps write down exactly what has happened since the beginning of your treatment--the very beginning. Maybe it will help your doctors to see if there is a pattern. Please talk to your pulmonologist ASAP.

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Regular Member

Date Joined Apr 2007
Total Posts : 43
   Posted 5/4/2007 2:01 AM (GMT -6)   
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.
Diagnosis:  Lupus Pneumonitis with Chronic Pulmonary Hemmorrhage and Anemia, Polycystic Ovarian Syndrome, Migraines  
Medications and Supplements:  60 mg Prednisone, 100 mg Imuran, 1800 mg Calcium w/ Vitamin D, 25 mg Prilosec, Iron pill 2x daily, albuterol inhaler, 50 mg visteral, 500/5 Vicoden, 25 mg Phenergan, Midrin, Imitrex

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 5/4/2007 2:32 AM (GMT -6)   
AveryLynn, I'm sorry you're having such a tough time with not only your disease, but in trying to regulate your meds.

I have a wonderful PCP and whenever I see any other doctor I instruct them to send her a letter about my visit plus any labs they have. So I have one doc who sees the entire picture. If that's not a possibility for you, you can at minimum request that your rheumy sends reports to your pulmonologist, and vice-versa. It's been a long hard battle for me, but I've changed PCP's and Rheumy's until I found doctors that seem to take me and my illnesses seriously and who are good communicators. Changing doctors is a pain, but if I eat in a restaurant that has awful food and service, I don't go back. Same with doctors.

At one time I was going to a rheumy who just kept increasing my prednisone, and when I asked for pain meds she refused to give them to me because her theory was that she wanted to treat the problem, not cover it up. I was on 60mg for 2 months. My PCP didn't comment, but I knew she was concerned, so I asked her for a referral to another rheumy. She had me start tapering very very slowly - 5 mg every two weeks. At the same time she started me on 2000 mg CellCept. The CellCept really did help me while I was tapering. Now I'm down to 5 mg and she's going to increase my CellCept. I'm still in a flare, but can get out of the house when I have to, and that's progress.

We all have different stories, and we're all full of advice, but the best thing we can all do is listen to our bodies and make sure we have confidence in our doctors. I do hope you're telling your rheumy and pulmon exactly how you feel so that they can help you get regulated. They ought to know how important that is.

Lots of luck with all this. We are here whenever you need to talk. I'm anxious to hear from you again and hope you'll report back that they are finally helping you.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

New Member

Date Joined Apr 2007
Total Posts : 19
   Posted 5/4/2007 6:10 PM (GMT -6)   

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.

UCTD, Pulmonary Vasculitis, Discoid Lupus, Asthma, Hypothyroidism, Sleep Apnea
Meds: CellCept, Plaquenil, Elidel, Levoxithyroxin, Bactrim, Lamictal, Lexapro, Xanax, Zonalon, Zyrtec, Rhinocort, Prilosec, Advair, Combivent, O2 as needed, CPAP

Regular Member

Date Joined Apr 2007
Total Posts : 43
   Posted 5/4/2007 10:26 PM (GMT -6)   
Update- I called my pulm today and she told me to take 60mg of Prednisone again today, tomorrow and Sunday. I will call her on Monday to let her know how it's going. If not better I see her on Tuesday afternoon anyway. I mentioned a more gradual taper, she said we'll talk about it on Monday.

What is CellCept, a couple of you have mentioned this now and I've never heard of it?

Patty- Thanks for the story, I am definitly going to be re-evaluating this situation if things don't start changing for the better. My pcp has asked that next week when I go see my specialists that they send copies of clinical notes to him so he feels like he can still treat me without interfering with their plans. He has been getting bits and pieces, not enough to get the whole picture.

Laura- Thanks for the suggestion. I think it is definitely time to try a slower more gradual taper. I'm dropping 20 mg a week, that just seems like it is way to hard. I was telling my mom this morning, I feel like I just walked full speed ahead into a brick wall. My whole body is achy. My breathing is horrible. I am having concerns about my breathing especially when I get up and move around. I asked about an oximeter for home last time I was in the hospital and they pretty much told me they thought it was an unecessary tool to have in the home, and the DR seemed to feel like it was a waste of money. I question that because I have seen myself have a rapid drop from the low 90's to a 74%. At the hospital they keep me on oxygen the whole time, then I come home with no oxygen or a way to monitor my sats. It's kinda scary.

Thanks guys, I'll keep you posted over the weekend. I appreciate the info as always.
Diagnosis:  Lupus Pneumonitis with Chronic Pulmonary Hemmorrhage and Anemia, Polycystic Ovarian Syndrome, Migraines  
Medications and Supplements:  60 mg Prednisone, 100 mg Imuran, 1800 mg Calcium w/ Vitamin D, 25 mg Prilosec, Iron pill 2x daily, albuterol inhaler, 50 mg visteral, 500/5 Vicoden, 25 mg Phenergan, Midrin, Imitrex

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