Hello Erica,
I really feel for you and not being well as your on a right cocktail of all strong meds going and you should be at least showing better improvement than you are.
I wonder if your on to much of a cocktail and making you worse because it is known to happen.
Thinking of you dearly xxx
@EdieLynn
I have joint pain and swelling, fatigue, the palms of my hands and feet hurt (extremely hot or cold) along with the other common symptoms of lupus. My blood work shows that the lupus increased ( he told me which test but IDR ) even after almost 9months of 400mg plaq and predisone treatments.
I think I have went undiagnosis for about 15 years ( since the birth of my second child ). I know I had flare ups, that went away with NSAIDs and steriods. The last 2 years has been consent flare. I will have a day that I feel better then others but still have some kind of symptom ( mostly pain and fatigue).
The methotrexate is suppose to be a treatment for Crohn's, so hopefully it helps there.
Have you noticed anything that helped with the side effects except for the folic acid?
Thank you so much for all the imput.
I am considering the benlysta if you dont mind would you tell me your experience with it?
PNW said:
I've been on methotrexate for 3 years. It's hard for me to tell which drugs cause which side effects - Plaquenil, Imuran, prednisone, Benlysta or methotrexate? I lose a lot of hair but that's common with several drugs. I'm very discouraged that I'm still having flare ups (still recovering from the last one), despite all the drugs. I try very hard to exercise, get enough sleep and a follow healthy diet. I sincerely hope the methotrexate works for you Dragonfly!
Hi Julie,
Well, I've had 7 infusions so far (8th one is scheduled for 17-Sep). I haven't seen any benefit. I told my doctor last week that I would like to stop and he said to continue with at least 1 or 2 more infusions. I'm fortunate that I don't have problems with the infusion itself but I get nausea and diarrhea afterwards (really embarrassing diarrhea!). Other people have said they noticed a difference in energy within the first month (you start with 3 infusions every 2 weeks and then go to one infusion every 4 weeks). I was SO hoping I'd feel that too but I don't. sigh.
Julie said:
I am considering the benlysta if you dont mind would you tell me your experience with it?
PNW said:I've been on methotrexate for 3 years. It's hard for me to tell which drugs cause which side effects - Plaquenil, Imuran, prednisone, Benlysta or methotrexate? I lose a lot of hair but that's common with several drugs. I'm very discouraged that I'm still having flare ups (still recovering from the last one), despite all the drugs. I try very hard to exercise, get enough sleep and a follow healthy diet. I sincerely hope the methotrexate works for you Dragonfly!
Thank you Terri! I'm seeing my rheumy on Wednesday and I plan to talk about just that issue - why is this drug combination still not stopping the flareups? I'm back up to 30mg prednisone and still feel like hell. Had 3 Solu-Medrol infusions last week which didn't do enough. I've heard others say they had good results with Rituxan or Cellcept. Maybe those are options.
Hope you are doing OK Terri - I'm sending you good thoughts.
xoxo,
Erica
Tez_20 said:
Hello Erica,
I really feel for you and not being well as your on a right cocktail of all strong meds going and you should be at least showing better improvement than you are.
I wonder if your on to much of a cocktail and making you worse because it is known to happen.
Thinking of you dearly xxx
Hello Erica,
Well i hope you manage to sort some issue out about it because just the prednisone alone and plaquenil should be good for you.
Erica it maybe that your body is refusing the meds because it can happen, if you've got to many lymphocytes which are the main factors of B cells and T cells...they're the main cells which help with the body and the medication is like a foreign object going into us, just like we having an infection...so the lymphocytes attack.
When i was told up the hospital that my organs what rejecting meds..i think this is what's happening with me...i'm still the same Erica thank you for asking, just get my dads when pains more severe.
Hugs & kisses Terri xxx
i was on exact same meds as you. I never got sick once on metho! Yes at first i felt some nausea and if you do just let the Dr know and they will give you some ant acid meds..or you can try otc brands and see if they work.
If they do not work than they can give you anti nausea medicine so do not worry. I was on the compound of it..liquid form. It did slow down the arthritis from destroying my joints as fast. I am actually considering asking my new doctor ...when ever i finish getting all info he needs, for it again.
Chemo is not like it use to be...most does not make people vomit all day like they show on TV. TV is not a good place to think of as real in any of the drama shows etc. I know my sister who is RN and my husband who was in legal and law enforcement only could stand to watch certain shows since most got it so wrong...or during the show...both would say that would never be allowed blah blah...
In fact...here..woman in my knitting class had very aggressive type of cancer in her back, near spine so surgery was out of the question. So she was on very strong chemo drugs for her treatment..and she come to class after treatment for two reasons. She noticed that if she did something enjoyable like our class she did not get sick ...if it took her mind off it because we having fun...or as she said, laughter is the best medicine. I know laughing makes my physical and emotional pain go away...so we try and be cheerful..usually one of had few jokes...funny animal stories or grand children ones...she only drank and nibbled that day ...so yes if she ate a full meal odds are it would have come up on her later..as she said.
OH other thing was Doctor you had...when she hated her cancer doctor..she got sick more period ..during chemo with out. Luckily the small town i live in had just open a cancer center and one of the Dr's there she loved...and made all difference in the world how she felt..she had hope and she did recover!
SO hope this lessens your worries...i was happy during the time i took it too and loved my doctors so i trusted him and the others completely. hope you do too...good luck