September 15th
2008
2:18 PM
How interesting to find this site! I, too, was diagnosed with temporal arteritis on February 29 (no more leap years for me!). Because I was already blind in one eye (had no idea) and losing sight in the other eye, I was put on 100 mg daily of prednisone. I had no idea of what I was in for. Since that time I have been able to taper down to 42.5 mg daily, but I don't think I've missed a single side effect. Horrific headaches. A 25-pound weight gain so rapidly it was unbelievable, moon face like I've never seen, was thrown into diabetes right away. My blood pressure went haywire, my cholesterol went haywire (had never had problems with either of them). I think I agree that the most debilitating has been the muscle weakness and leg cramps. I have no balance, have had 3 serious falls. The latest is my skin is breaking down and I'm losing my hair. What hair I have is like somebody held a match to it and frizzed it. I'm short of breath, keep trying to exercise and it's like climbing a high-altitude mountain. Swelling of my feet to where I can wear NO shoes except for Crocs in about three sizes bigger than I ever wore in my life. Now I have a liver problem, am being sent to an "ultra-specialist" for this. The good news is that my remaining eyesight has been stable, and I am very thankful for that. I have been assured by multiple specialists that I would have been blind by now if not for the prednisone. Although it is very difficult for me to read by the time night arrives, and that was my chief "hobby." The other part of this whole sad saga (ha) is how much money my husband and I have been out this year -- unbelievable. Lab tests or doctors every single week and sometimes every single day. I am now under the care of 5 different specialists (ophthalmology, rheumatology, cardiology, hepatology and internal medicine), and it has been so incredibly expensive. This is even with fairly decent insurance. I have been told that I have at least six more months to go on this treatment, and then possibly another year on methotrexate. Thank God I have NOT experienced the depression that seems to be a common thread here. I am trusting in Him to get me through this itme and to come out on the other side completely cured. But it does get difficult in the meantime.
-- By dblackstock | Reply | Private Message me
November 15th
2006
6:15 PM
I am currently on my Lupron and have found it to be a nightmare for me! I am only on it for one month. My doctor is wanting to see if the cyst and fibroids are the sourse of my pain. My pelvic pain has pretty much ended, but I would take it all back in a heart beat if it meant all these side effects would go away. Hot Flashes lasting about 10 minutes at a time, night sweats so bad I have had to change my clothing, migrains (I've had 5 in two weeks) that just knock me out for a full 24 hours, memory loss, joint pain, itchy skin, and mood swings like nothing I have ever experienced. To top it all off, I have had quite heavy bleeding while on it as well. I finally called the doctor and told him I was suffering more now than before the shot. He is going to put me on a small dose of esterdol (sp?) and see if that will help while I wait for this junk to leave my body. I just pray the effects will not be permanent.
I am happy for those who have found help for endo and cancer from this drug and I realize that some people will not have serious effects, but a certain percentage does. There's no way of knowing what you will do until you try it, but just be prepared that you could be one of unfortunate ones who do suffer horrifically while on Lupron.
-- By aretta | Reply | Private Message me
June 16th
2009
2:26 AM
22 years old i have had Coltis for 5 years,flair ups pretty much the whole time, i have been on Prednisone a lot this last time has been the WORSE!!! All i can say is i hate it!! i was put in hospital the 4th time steroid thou the iv for 5 days sent home got worse again back to hospital then to try Cyclosporin thou the iv and also the steroid thou the iv. Ten days later they sent me home on prednisone coming off the iv was hard the pain in my legs was unbelievable!!! finally i was sent home on prednisone,coliform anemas,salfak anemas,and salfak granuls,i thought the worst was over but it was far from it... I turned in to a complete loony,crazy women i don't even know myself anymore my poor partner and kids. Having to deal with the pain and everything eles that comes with having a flair up but then also going though the side effects of the prednisone and the coliform was unbearable, i just wanted to die! My flair up was not getting much better and i hated myself as i felt i did not know myself with the mood swings, the crazy flip outs,crying all the time.My partner has been great having to pick me up off the ground and turn the crying reck into someone half normal. I hate the moon face,weight gain, im hungry ALL the time,night sweats,sleepless nights sore teeth,I have come off it now its been 4 days, so now all i need to stop its the coliform then i will be steroid FREE!!!!! i cannot wait!! For my face to go down and to be normal and back to the good old me! I forget what shes like... Coming off the Prednisone has been hard with the leg pain,muscle aches,head aches,mood swings,nausea. Its just hard as no one around me understands what im going though or what it feels like so i just sound like a sookie cry baby or a raving loony. does anyone know how long it takes for moon face to go away??? I wish everyone luck with there battles with Prednisone, its one of the hardest things i have had to deal with. =) your not alone. stay strong and be positive even throu your lowest times.
-- By roxy8_7 | Reply | (2) replies | Private Message me