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lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 9/1/2007 10:39 AM (GMT -7)   
Hi everyone,
I haven't been too good lately because of the steroid induced diabetes problems. I am waiting for an appointment with an endicronologist and in the meantime my gp has told me not to use my prednisolone sad . How do I manage without it? Is there anything else instead. I tried plaq when I was first diagnosed but it was no good for me. I'm really struggling with swollen painful joints and very sensitive skin. I'm exhausted and I think I have a slight temperature today. Don't know how long I'll have to wait for the appointment so any ideas in the meantime? Thanks Guys. x x
Chillblain Pattern LE, possible SLE, tachycardia, proctal fugax, anismus, slow transit constipation.
 
Prednisoloe, 35mg
Tramadol
diclofenick


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 9/1/2007 12:01 PM (GMT -7)   

Have you tried Cellcept or Imuran?  These are also used for Lupus.  I am on Cellcept and it seems to control my recurring symptoms.  I cannot take Imuran.  I am on a low dosage of Pred. (10 mg) and my doc aims to lower my Pred.

 

 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/1/2007 1:33 PM (GMT -7)   
I'm really sorry you are having to go off of pred. I'm like you and feel just awful without and run fevers almost everyday if I don't take it and I end up hurting so bad it's hard to get around. Omega had some good suggestions about Cellcept and Imuran. Another med used to control lupus is Methotrexate. I haven't taken any of these yet, but I seem to hear the most postive things about Cellcept.

If your pain level gets too high when you go off of pred, you might need to ask for a stronger pain reliever than tramadol.

Hang in there and I hope the endochronologist can help. ((((Hugs))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/1/2007 3:16 PM (GMT -7)   
Hi, Lion. I am dealing with the steroid-induced diabetes too. Would you care to share a little more about the #'s you get and how it was found? I actually found mine myself using a blood sugar meter. I've posted a few threads previously asking questions and sharing the details I've dealt with if you're interested. My docs have not seemed that concerned over mine. They certainly haven't named my stopping the prednisone. While I know that is the culprit, I can't imagine living through the withdrawal and what all will come back afterwards. I am still tapering and on 9mg daily right now. Have they worked out a slow taper for you? There are a few other meds out there that help some people with their lupus. Unfortunately, I've had bad reactions to almost every one! The LFA website, www.lupus.org, provides info. on most of the meds used to treat lupus. Go under the "about Lupus" tab on the home page. Then go through the "Diagnosis and Treatment" link in the left hand column. Under the "medicines" link they are all listed out with brief explanations of each one. I hope to hear more back from you. Hope this is helpful, take care.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 9/1/2007 5:06 PM (GMT -7)   
Hi, thanks omega & hippimon. I will ask about the cellcept. I have taken imuran before and it didn't agree with me, but the other is worth a try.
Hi Sharen, thanks so much for your post. I have been feeling a little out of my depth with this diabetes thing. The lupus I am just getting to grips with and then this happens. I went for an appt with my gp as I was feeling unwell, but didn't seem like the lupus. They ran some bloods etc and called to say my sugar was far too high. I can't remember exactly what the first one was. They sent me to have an ogtt test, 3 times! the numbers werereally high. I think about 17 for one test. The pred I only take as and when needed and I take 35mg a day for about 7 - 10 days. Then last week I went for an appt with the lupus consultant and he did the usual urine dip test. It showed ketones & glucose. I had to go back to the gp and she referred me to this endocrinologist. Because she said it was dangerous to have ketones leaking into the urine the pred had to stop. I'm just struggling without the pred as my lupus is active now. She said that steroid induced diabetes often clears up after stopping the steroid, but not always. It can be a sign that the body is pre disposed to getting diabetes anway. I hope to get my appt soon but I'll check out the lupus link for med ideas. The thing thats bothering me is my lupus doc didn't want me to stop the steroids but my gp insisted. So now I wait, in pain and tired with it all, and I think although i'm stopped the steroids I still have high blood sugars. Who knows?
Chillblain Pattern LE, possible SLE, tachycardia, proctal fugax, anismus, slow transit constipation.
 
Prednisoloe, 35mg
Tramadol
diclofenick


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/1/2007 9:34 PM (GMT -7)   
Hi, Lion. I hopped back on here tonight eager to see if you'd seen my post. I'm like you...this lupus was a hard punch, but now the diabetes on top of everything is REALLY OVERKILL!!! I hate it! I am trying to control my blood sugar with my diet because like you, my rheumy didn't seem too concerned about it. Only I haven't had that test you speak of, all I can get any of my docs to do is the A1C test. My PCP doesn't seem concerned either. They don't think I need the glucose tolerance test. My rheumy says since we know of the problem, his first response would be to try to control what's happening by changing my diet. I've learned about the Glycemic Index and am trying to follow that as a guide for what I can eat. It is tricky though! Here is the best website I've found to give you a head start if you need it. www.glycemicindex.com. I'm also reading the book titled "The Sugar Solution" by the editor's of Prevention magazine with Ann Fittante, MS, RD because it makes it a little easier to understand. Did you look for my previous threads about this? I don't want to repeat everything, but I actually had to purchase a low cost blood sugar meter on my own to test with because I couldn't get either of my docs to see a real problem. My rheumy assures me that he can tell by the A1C test if my #'s are getting dangerous, but in the same sentence he can't explain why my blood sugar is going up since I am tapering the prednisone. It should be going down! Neither of them know why that's happening, but yet they expect me to trust them and not worry with it. This is the ONLY body I get! I have to live here hopefully, for a long time yet. I'm just 35. I hate the way I'm having to eat or NOT eat I should say! Were you only taking those dose packs of prednisone? Your going from 35mg to zero concerns me. In another post I read earlier this evening, I gathered they went from 60mg to zero! I'm no doc, but I can understand enough from the words Adrenal Insufficiency (or Addison's disease). This is what happens when you suddenly stop taking steroids without tapering (what allows your own adrenal glands to start functioning properly and producing the steroids your body makes naturally). This is dangerous! When I did come completely off of prednisone once last year (even somewhat having been tapered); for an entire month I could do nothing more than lay on my couch, running fevers, chilling, feeling like death warmed over! I just feel for you. Please keep me updated as to what's going on with you. This is pretty scary. Take care.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 9/2/2007 1:58 PM (GMT -7)   
Hi Sharen, thanks for your reply. I truly know how your feeling right now. I'm utterly fed up with everything too. It's like a catch 22, the pred helps so much with the lupus, yet it makes us ill with the diabetes. I would be a little more concerned if my gp wasn't doing anything though. I think you need to push for more testing. The ogtt is a glucose tolerance test and I think it shows how well the body is able to convert the sugars. The problem with doing nothing is it is not safe!! Sometimes people like us are pre disposed to getting diabetes and taking the pred just pushes us over. Because I only take the pred as and when it's needed (normally once a month) my gp says this is fine to stop. The diet side of this is also a little difficult. Quite often with steroid induced diabeted the diet is not enough as the pred pushes the sugars up anyway. The endocrinologist will decide about meds etc. I would have said if your sugars are still going up even though your pred is going down this is something which really needs more investigation. Maybe it's not just the pred which is doing this, maybe you have developed diabetes following the pred which my gp told me can happen. Do you feel ill with the diabetes? have any symptoms. I get terrible blurred vision which is driving me mad. I always felt tired with the lupus but even more tired now. I'm only 32 and I have a young daughter and this is all really hard to cope with. Take care, hope to hear back from you soon x
Chillblain Pattern LE, possible SLE, tachycardia, proctal fugax, anismus, slow transit constipation.
 
Prednisoloe, 35mg
Tramadol
diclofenick


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/2/2007 9:08 PM (GMT -7)   
Hi, Lion. Thanks for your reply too. It's nice to have someone else dealing with this very same thing to talk to.

I have gotten very frustrated over this just recently. I actually changed my rheumy to the one I'm now seeing, although there were several other problems as well. I really feel like my rheumy should take charge of this since it is his prednisone Rx causing the problem. After my most recent appt., I feel like he definitely knows there is a problem. I will certainly talk to him about referring me to a endocrinologist if I become unable to control my #'s with my diet, or if my fasting #'s start going out of the normal range. I'm doing pretty good the more I learn about this stupid glycemic index and really control my portions. As I more fully explained in my previous post, my rheumy will be doing that A1C test regularly now. I can even call him if I feel like there's a problem and he can order the test for me to do right then. I really don't feel like my PCP has a good handle on lupus, so I try not to discuss lupus related problems with him. Fortunately, I was able to get all of my supplies refilled yesterday, so that helps.

I didn't realize you only took the prednisone once a month. I don't think I've ever heard of that before. I'm not sure how your adrenal and associated glands respond to that one.

I don't think my #'s are going high enough to really effect the way I feel. I've spoken with a couple of people I know who have diabetes and that's what they asked too. My #'s are doing pretty well now that I changed what I eat. If they are out of the normal range, it is only like in the 130's, very rarely now in the 150's. If it does that, I immediately decide either not to eat that anymore or do some modification. I've kept a journal of my meals and the #'s they give me since I discovered this problem, so I know a lot of things I can eat without any problems now. It's just a long learning process. I think I am actually feeling better since eating healthier though.

Not meaning to change the subject, but I noticed you have listed "constipation" as a problem you also deal with. I have had an extremely bad time with that over this past year and a half! I passed blood for over a month and a half before on my own stopping the Nabumetone that I felt like was contributing to the problem. Sure enough, the bleeding stopped; but I still had the constipation. I was having to take an expensive fiber supplement as well as stool softeners (which still didn't always take care of the problem--I would go for several days without a movement!). I just started using milled flax seed as a supplement in August and I have completely eliminated the fiber! I will soon start trying to leave off the softeners to see if it has also relieved that, but I am doing SO much better in that embarrassing dept. The flax seed offer Omega 3's; they have anti-inflammatory properties as well.

Sorry this is SO long. I just wanted to touch on everything. Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 9/3/2007 7:14 AM (GMT -7)   
Hi Again,
I'm pleased to hear that your managing to keep your numbers within range with your diet, this at least is a good sign and your doing really well with it. The glycemic index is really difficult to get to grasps with. But it doesn't seem to really matter what I eat when I was on the pred, the numbers were always high even after fasting. Your right about this being frustrating! I think because the gp and the rheumy are involved, both see things differently, both want to manage it differently, yet it's us that are in the middle.
Funny you should mention the constipation. I've just received a long awaited appt for 10th October when I see the consultant and the colorctal nurse together. I've tried everything for this problem. I even did the bio-feedback with the colorectal nurse. I regularly go 7 days -10 days without going to the toilet because the anismus means the internal & external muscles don't contract correctly. The main problem I have is the proctal fugax, which is like a massive spasm of the bowel. It is the most painful thing ever. I think they are going to discuss something called an appendix wash? when I go. Still no appt with the endicronologist, I think I'll ring if I haven't heard by the end of this week as I really need to take my steroids. If its not one thing, it's another!! Take care, and well done on your numbers x x
Chillblain Pattern LE, possible SLE, tachycardia, proctal fugax, anismus, slow transit constipation.
 
Prednisoloe, 35mg
Tramadol
diclofenick


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/4/2007 6:28 PM (GMT -7)   
Hi, Lion. I didn't know what some of those things were listed in your signature. Now I feel like I don't have any problems in that area! Do they know why you are having those problems? Is it related to the lupus, or something else entirely? Was it a previous post from you that I read where they haven't officially diagnosed you with lupus yet and you're having problems getting answers? Have you had those other problems for long or did they start when your meds started? I'm pretty sure my problems came from all the meds they put me on; during last year especially! Good luck with that appt. in Oct. Please check back and let me know what happens. Thanks for the added support about my blood sugar! tongue I'm finally making some sense out of that glycemic index. It has a lot to do with portion size though. I will have my next follow-up with my rheumy toward the end of this month. He will probably begin trying to taper the prednisone some more regardless of whether my blood sugar has stabilized or not. I just dread the next drop because it was at 8.5mg when I had a pain in my chest that felt like a heart attack. He said it could have to do with my lung involvement. Something that sounded real professional about this being connected to that and it could have to do with the pleurisy pains. ?Who knows? I did notice you're a mom, in your previous post. I just felt I couldn't say anymore because my last one was SO long. Just try to hang in there. I'm sure you're doing a great job with your daughter! As she grows up with you understanding what all you deal with, she will probably turn out to be very compassionate and caring. Just take it easy on yourself, children are able to cope and understand things a lot better than we think. Especially with your being so easy to understand. Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

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