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Prednisone
So I saw my Nuero today and after they found out how little the Mestinon is really helping, decided to get me on Predisone. This has been a very difficult 2 months. I had no idea I could feel almost normal with meds. I have been living basically crippled, barely able to sit on the couch and lucky to shower without having breathing issues. The last time I saw them was only the second time, and compared to the first time, (when I was diagnosed) I was feeling 100x's better, and told them I felt 80% to normal. Well the first time I saw them, I was probably hours from crises, so I did feel 100x's better. Today my husband told them I was only about 20% of my normal self (which he had observed and never told me, I'm lucky he watches out for me ).
:D I am very very excited to learn that I don't have to live this way for the rest of my life. I can't believe I may be able to take walks after dinner with my husband again!!!! Thankfully I will be starting my doses at 5 mg, and increasing another 5mg a week until I feel better, but I would like to take a few weeks at the 10-15mg range. Anybody have advise about what dose works for them, and how to combat the side effects? Thank you Jessica |
Hey Jessica
I definately think it's better to start off at a low dose, especially if you have bulbar symptoms...Prednisone can make you much weaker at first, so this could cause a crisis...
I was started at a very high dose (60 mgs then increase to 80 mgs), and I've developed diabetes after taking it for only a month and a half...So taking a high dose might uncover things that may have been managed okay prior to taking the steroids... I'm glad that you've got your husband looking out for you...I think that we tend to minimize things, and it's hard to be objective... I wish you lots of luck on your road to recovery...You're going to be feeling awesome in no time! Nicky:) |
I started on 40 and just upped to 60.
Does anyone know how long they keep you on this stuff? Diabetes?? Very scary!!! Nick, What are your docs telling you to be proactive on the diabetes?? |
Hey MissGomes
I literally just found out that my blood sugar is abnormal (last week)...I haven't even been diagnosed with diabetes officially by a doctor...The nurse checked my sugar yesterday, and it was sky-high, so I'm guessing I have it...I had to leave a message for my neuro. to ask her what all this means and what I should do in terms of the prednisone...
To tell you the truth, I think that I may have had it before I even started the prednisone...I was having symptoms of it...But it wasn't as bad as now (the symptoms, I mean)... really watch out for anything abnormal, which I'm sure you will do...Be very proactive...Write down any/side-effects you experience and tell your GP right away...I'm going to see mine today to get this all sorted out... I'm scared to take my prednisone now:eek: |
Hi Jessica,
I was started at 60 mg daily (and I was put in hospital for observation in case I crashed). I had no problems with increased weakness. That was Nov 2007. Then about 6 months later I started decreasing my dose very slowly. I seemed to plateau at 40mg alternate days (40mg one day, next day no steroids). At that point I was able to work and function "normally" but still felt weak on occasion (particularly around my period). My neuro wanted me to stay there until he reassessed me, but I'm still waiting for the reassessment almost a year later. I've been feeling way better lately (YAY) so last week i decided to go down to 35 mg and see what happens (I'm sure some of you are giving your computer disapproving glares right now). Don't worry though - I'm monitoring myself closely and if i feel at all different I'll go back to my 40 mg. I would dearly love to start to look like myself again though - I've had so many comments lately that I'm looking better. I was lucky to escape diabetes, I watched my sugar really closely for the first few months, but inevitably slacked off as I got used to the pred. My side-effects have been all superficial, I had a bone scan and my bones are quite healthy and strong and I have had my eyes checked as well. You do need to be kind-of hyper-vigilant about your health when on steroids. overall, I've been lucky though. You might want to search Cushings syndrome as that is probably the worst "superficial" side-effect you might encounter. (I think I mentioned this in another post) I had swollen face, belly (central-belt obesity), a fleshy lump at the back of my neck, I lost some hair on my head, gained some on my face and arms (nothing too drastic though - my husband assures me I'm over-aware of it and no-one else would notice), have pretty bad stretch marks on my tummy and legs, slightly darkened eyelids, and a bizzare rash around my nose that no-one knows how to get rid of (right now this rash is my biggest annoyance). I wish I had some great tips for you, but I've just sort-of dealt with the side-effects. Try to stay cool, I find the heat increases the swelling and redness of my face. Sorry I can't be more helpful! My brain is a bit mushy at the moment. Take care, ~Kathy |
Hi Nicky,
I just read this after my huge post - I know you are scared of diabetes, but NOT taking your pred is not the answer. That can cause more problems, maybe even heart attack. Better to keep taking your meds as normal and wait until you hear from your neuro. Hope you are okay!! ~Kathy |
Make sure not to stop Pred cold turkey! You have to taper off or your adrenals will make you hurt as well.
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Hi Sugrkiss!
Hello and WELCOME! I've said it b/4 and I'll say it again - even with all of my side effects, I love my pred! It has truly been a life saver!:D
I was started @ 10 mgs in the hospital. It was doubled until I was @ 80 - 8 days later! I felt AMAZING! I was up and watering my yard and taking care of my family like I used to! Even on 60/40 pred, my blood sugar has stayed low - it was 79 the other day, but it has gone up to 140 on a few occasions...... I HAVE been down to 15 mgs, but crashed - apparently that is the "magic" number - I know I'll be back to 20 soon. I have been told that I will probably always need to be on a low dose, but as long as I am able to function I am very happy!:D I have been told that there is ALWAYS weight gain when you are on pred, so be prepared. However, it is soooo much better than having a crisis. Once you find your magic number things will even out. I know it worked wonders for my Gram - she looked normal after a few years - and that was on the hard stuff!:D I am so happy to hear you are feeling GREAT! Big hugs! Erin:hug: Quote:
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Hi Jessica,
I too started Pred at 5mg/day, as an in-patient and I stayed at that level for a week due to the worsening of all symptoms. After that, increase by 10 mg/d every week, and I was released from the hospital at 45. The dose was later increased to 75 mg/d (1 mg/kg of weight, which is the usual max dosage) due to the lack of results. I noticed a sharp increase in my physical abilities (I had generalized MG) after about 5 months (I also take Cellcept...),bulbar symptoms disappeard after about 3 months from the beginning. Pred dose was then continuously tapered and I'm now closed to my stable level as the change from 5 mg to 4mg/d caused some problems and I now try 4.5 mg...with my 4 daily 60 mg Mestinon. Pred may cause osteoporosis (increase calcium content in your food intake), potassium depletion in blood (eat food with high potassium content), glaucoma (have your eyes regularly checked for that), diabetis (decrease sugar intake) and weight gain (significantly reduce salt in your food!)> All this should also be regularly followed by blood analyses which your neuro should prescribe. I hope everything will go well for you, Maurice> |
Hi,:hug: I have this love/hate relationship with prednisone. It has caused me a whole knew file of medical problems, and yet, it makes me feel like "today, I'm strong enough to make dinner" If I didn't have it, I'd be bedridden.
I started out with 20mg in the hospital, and then went up to 60, and then down to 30 for a many months, and then to 20mg. For the longest time, I couldn't go below twenty with out my breathing tanking. After a year of weaning down, and going back up, weaning down again, I'm at 10mgs, and have been holding at 10mgs for the last 10 months. (oh, and my dosages have always been daily, for some, it's every other day) I've been on Prednisone for over 5 years now. I wasn't given the choice of how much to start out on, nor was I in any way shape or form informed about Prednisone," just take this, and let me know how you're feeling". My first neuro wasn't very talkative, and had a very thick accent. She was nice and all, just not one to tell her patients what to expect.And I look back, and she really didn't know as much about MG, as she should. I now am with a Neuro-Muscular specialist, and I love him, he is a director of the MDA in his city, and has several MG patients. He knows his stuff. Oddly enough, I had the option of having him as my doctor when this all started, but I would have had to wait a couple of months to get in to see him, and I didn't want to wait that long, so I choose who ever I could get into first, and the fastest in his practice. I should have waited, and seen him, causeI wouldn't have had to wait so long for certain meds. Knowledge is very powerful in controling your health, so read as much as you can about Prednisone, and your illness/illnesses. And most of all, Listen to your body. best of wishes Love Lizzie |
Jessica
So glad you are getting relief, no one likes being on these drugs, but if they help your quality of life so be it ! |
How long does it normally take for you to feel better after starting prednisone? I have been on other treatment for MG but for some reason over the last couple of months it isn't working like it used to. I am thinking about going the prednisone route but am still unsure because I have had flare ups of MG in the past and it has always calmed down eventually without the use of Prednisone. This flare is lasting longer than usual so I am in a little pickle right now.
My neuro wants me to see a MG specialist at the end of the month for a second opinion on my treatment plan so I have until September 30th to decide if I want to try prednisone. I guess the hospital stay, the "getting worse before you get better" kinda frightens me a little bit as well as the possible side effects of prednisone. I'm so confused. |
Hi Shari, I would wait and see what the specialist says. If you can avoid going on prednisone that would be great. Although Prednisone can work wonders, it is Not with out dangers of it's own.
The down side to it is, once on, it's very difficult to get off. After being on prednisone for about 7 days, the body "has" to have it, as the adrenal glands shut down, and have to be slowly wake up again. And sometimes, after a long time on it, the adrednals don't want to wake up. I've had prednisone be blamed for Pulmonary Hypertension, and of course diabetes, high blood pressure, weight gain, and although so far I'm good, it can cause bone loss. These are just a few things, please read as much info as you can before making a decision. On the positive side, Prednisone has given me a little of my life back. I'm not as weak, I don't collapse with fatique. I'm able to get the laundry done, and some work around the house, and most importantly, double vision doesn't happen as much, and breathing is much better on prednisone. So, I guess what I'm saying is for me, Prednisone has put me in the preverbial 'between a rock and a hard place' . I've been on prednisone for well over five years now. Some people don't have hardly any problems with it, others have a mountain load of issues while taking it, and many are inbetween . Unfortunately, I'm one who has had many other medical issues because of it, but I need it. Educate yourself as much as you can. Best of wishes to you, and please give an update on what you choose, and what the specialist says. Love Lizzie |
Thanks Lizzie,
Everything you mentioned is the reason why I am trying to do everything in my power not to begin prednisone therapy. I tend to have a bad MG flare up every four years or so but am really baffled as to why I had this one considering that my treatment plan for MG for the past 4 years has been pretty aggressive. We have increased my cellcept dosage from 2000 mg to 2500 mg daily and now have bumped my IVIG back to once a month instead of every 6 weeks. I also have increased my mestinon dosage a little as well. It's been a couple of months now since my MG symptoms have come back and they are still hanging around so I guess I am just a little impatient about getting them under control again :o I tried a different IVIG brand the last couple of times and I am going back to the one I had before. The new brand left me feeling worse with side effects than my old one and it doesn't apppear to be giving me the benefits that I used to get. But prednisone really scares me because of everything you said. I can say this, the intensity of my weakness is not nearly as bad as it was a couple of months ago so maybe I just need to relax and not worry about it so much. My husband keeps telling me to take it one day at a time as I have done in the past. I guess I just got spoiled to feeling "normal" for so long that it is hard for me to adjust to feeling like this again. I am still not as bad as many others who post on here so I am really thinking long and hard about the prednisone therapy. I just want to get back to being able to do things with my husband and kids instead of being afraid to do anything because it might make my MG worse. I am not living right now, just merely existing. |
Hi Shari!
Hi Shari! Prednisone is really hard on the body, but for ME it was well worth it! Being able to make dinner or clean my home makes it worthwhile!:D
I won't lie. I no longer look like myself. I have had many side effects from the prednisone. I am up to 170 lbs. I have acne and shake like a leaf, but I can get off the sofa again!:D I MISS the "old" me, but I am HERE and know that the side effects will go away pretty soon!:D My Gram had a heart transplant back in 87 and was on MASSIVE amounts of steroids, but she DID look like her "old" self after a few years....... You really need to weigh the pros and cons. I know that most of us feel VERY strongly about steroids. Believe me when I say that if there was any other way for me to feel better minus the roids I'd do it, but I am pretty steroid dependant......*sigh* Hang in there! Erin:hug: Quote:
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Hey guys,
My hematologist said that my diabetes is borderline, and I should be able to manage it with diet...He told me to monitor it in the morning and a couple of hours after a meal...So far, it hasn't been too bad...Also, I think that my neuro. might reduce my prednisone because of this, so I'm kinda relieved....Taking prednisone is kinda too scary for me, I think...There are just too many new diseases/infections to possibly contend with...At least with the MG, there's just the one...The infections thing scares me a lot...I might search the internet too much, but I'm always finding these articles about people getting brain infections because of prednisone, and it's kinda too scary!:eek: Nicky |
Nicky,
That's good news about the diabetes! Was worried about you. Even if you can't lower the pred right now, at least you know you can impact the sugar levels adequately enough through diet for now. Sue |
Hi Shari!
Forgot something......the pred made me feel better IMMEDIATELY! Granted it was prolly b/c I was also receiving MASSIVE amounts of IV IG and fluids, but really and truly the very next day my speech problems were gone! *poof*!
Hope this finds you strong and happy! Love, Erin:D Quote:
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Hi Nicky!
Hey sweetie! Whatever you decide about pred, please do not stop taking it cold turkey. It is really dangerous!:(
How are you feeling today? Love, Erin:D Quote:
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