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Rheumatoid Arthritis
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Posted 4/7/2019 7:31 PM (GMT 0)
I am so tired. Literally. Mercy me I hurt sooo bad. My RA is raging. I have a sed rate of 92. I know different scales read different so mine ranges from 0 to 30. Gives you an idea of how bad it is. I’m on simponi right now. Don’t think that it is working now. Going for full body bone scan tomorrow. I pray my doctor gets some answers so that I can get some relief. Anyone else going through this right now? I know we all suffer. Hugs gentle ones to you all
Peggy
Posted 4/8/2019 2:55 AM (GMT 0)
Hello Peggy:

I'm very sorry to hear of your fatigue and raging pain. We RAers, all know how you feel.
Is the time frame for the Simponi almost finished or past yet? If so, do insist that your
Rheumy stop it and start you on another medication. The inflammation and fatigue will
only get worse.

No, thankfully, I have been about a year or a bit more, without severe, bodily pain except
in my shoulders now and of course, last August and September, after falling down the stairs.
(Not my swiftest day. : / ) I'm still tired since I have other conditions and stuff going on. Not
as bad as the straight 12 years of severe pain and fatigue, before.

I hope that your bone scan turns out Good. Best of Luck! Gentle Hugs Back at You!! smile
Posted 4/8/2019 5:13 AM (GMT 0)
MsOuchie thank you so much for your response. I actually sent a message to my RA thru the medical portal we have and told him how I am feeling. Hard to get an appt with him and my next one is about 4 months off. So I want him to know before. I’ll let ya know about the scan. 😊
Posted 4/10/2019 6:40 AM (GMT 0)
Hi Peggy:

That's good that you made a Rheumy appointment and warned him ahead. I know that 3 or 4 months feels like a long time away but it will probably pass before you realize it. Don't watch the calendar! Keep yourself busy or try to rest.

Did you ask to be put on the cancellation list? Some people don't feel well enough or cancel their appointments for many reasons. So, the secretary phones patients on the cancellation list who are in a lot of pain. I use that system when I really feel bad. Sometimes if I phone my Rheumy before he starts rounds and I have a problem, he'll call me back and suggest something or he'll sneak me in the same day, if it is really bad.

How did your scan go?
Posted 4/10/2019 3:56 PM (GMT 0)
MsOuchie yes I call and get put on the cancellation list. But it’s almost impossible to see him that way too. He is in such demand because he is a good doctor that cares about his patients. And out hospital which he has to work under is forcing him to take days off so his PA can see them. However no one wants to see her and he is having a fit with the hospital. I’m afraid they are going To run him off. I pray that doesn’t happen. He is one of the best. Had bone scan done Monday haven’t heard from that yet.
Hugs
Peggy
Posted 4/11/2019 5:12 AM (GMT 0)
Well done! You're a smarty getting on the cancellation list. smile We know there are far more patients than Drs. but it should help even by a week or two perhaps.

That is certainly a rock and a hard place that your Dr. is in. I wish him the best for his future and that of his patients.

Take Care and Be Strong!
Posted 4/11/2019 7:07 AM (GMT 0)
MsOuchie my doctor has his nurse send me a message today. Said my Simponi has quit working not to take anymore. I figured that was the problem. Usually is. Anyway back to square one as I have taken so many of the other meds that he has to look at my file and fine one I have not been on. Today he said orencia but I have failed that one also. I suspect he must have been away from the office and wasn’t able to look at it. Therefore it will be a few days before I hear back. In the meantime I have jacked my prednisone up in able to tolerate the pain. The bone scan just showed what he already knew and that was that the arthritis was in worse. I hope you are doing well.
Hugs my friend.
Peggy
Posted 4/13/2019 1:55 AM (GMT 0)
Well Peggy, that's good that he had his nurse get a message to you soon anyway.
Proves that he cares about you. Too bad about your scan also.

How long have you had RA? My memory isn't wonderful anymore.

I didn't do good on the biologics either, so we went back to the old drugs. I'm
hoping that they come up with new meds for people like us. There are a lot.
My Rheumy said, if he knew about people like us when he started, then he would
have begun a study way back then, just for us. So he regrets.

Have a better week-end!

Hugs to you! .... *Mo

Yes, I had to put my Pred up also. I couldn't stand the shoulder and neck pain. I
feel better now, so I start tapering on Sunday.
Posted 4/13/2019 12:22 PM (GMT 0)
MsOuchie so what are you on now? My doc wants to see me Wednesday has a lot to talk about. Thank goodness he told his nurse to get me in. I’m so thankful. He did send message back for me to start another drug and stay on the Simponi. He started me on Sulfasalazine along with it. We will see if he changes the Simponi when I see him. I’m glad you are feeling good enough to start tapering the prednisone. I hate taking it but it sure does help when you are in lots of pain. Have a wonderful weekend my friend and thanks for talking to me. It sure helps to talk things out.
❤️ Peggy.
Posted 4/15/2019 4:40 AM (GMT 0)
Yay Peggy! That is Excellent! Did I mention that the time would pass by fast? Ha!
Make sure to write down any questions that you want to ask him. This is your chance.

Sulfasalazine! That is the same one that I am on, along with some other meds. One
or two will not do. I tried many of the older drugs first, then the biologics and Xeljanz.
So now I'm back to the older drugs. I was on Methotrexate, both tabs and liquid, for
many years also, along with other meds. Yes, it's good to discuss problems with other
people. You're Welcome! Good Luck at your appointment and with the new med(s).
Take care!
Posted 4/16/2019 10:33 PM (GMT 0)
MsOuchie I think I am going to quit the sulfasalazine. I have been up with anxiety attacks and have had to take a Xanax every night. I don’t like having to do that. I know it’s the Medicine doing it because I haven’t had to take any Xanax in a very long time. I see my RA doctor tomorrow and I will make sure he is aware of everything. I’m just sick... I just feel so bad I cannot walk very far because I give out and have to sit down if I go to Walmart I have to have a buggy even if I don’t buy anything. Can’t hold out to walk. Can’t exercise to try and build my stamina up. I have never ever felt this bad before. And it just feels awful. Sorry to unload. I’m not usually like this I try to be an upbeat person but this time it’s got me down so bad I don’t know what to do. Don’t even feel like going anywhere much. I manage church and occasionally out to eat. Other than that not much else. Maybe tomorrow he will have some answers for me. Thanks for listening to me. I really do appreciate having someone to talk to.
Peggy.
Posted 4/18/2019 6:37 AM (GMT 0)
Oh, that's too bad, Peggy. The Sulfasalazine did cause me occasional hot flashes and some anxiety but it works well for the pain, so I'm staying on it until it ends.

Well, good luck at your appointment. I hope he can figure out something that works for you without bad side effects.
Posted 4/18/2019 10:31 AM (GMT 0)
MsOuchir my appt went good he stayed with me a good while. We talked about what I had been on and what worked the longest which I couldn’t remember and since they switched to a new system he don’t gave the old info anymore. That’s a shame. But anyway we ended up trying the methotrexate again with plaquenil and the 10 mg prednisone. He said ordinarily he would jack me up higher on the prednisone but it runs my sugar up plus makes me swell and gain weight. I don’t need to gain any weight for sure. He said we will try this and recheck me and labs in one month. Last time methotrexate caused my liver enzymes to mess up. He said there is a very promising drug coming out this summer. It we can hold my ra down till then he will put me on it ASAP. He said lots of good results with it. So that’s where I stand. Thanks for listening to me and talking back.
Hugs my friend.
Peggy
Posted 4/19/2019 9:50 PM (GMT 0)
Your Rheumy sounds like a great guy. Ya, that's too bad that our old records are not easily available. I know when I was younger, we were given our old files(mine was easily 5" thick) and the nurse told me to carry it to my Rheumy's office. Now, all the old files are in the hospital basement. I still remember all of the meds that I was on. That's why I told my Rheumy that I was never on Salfasalazine before. He thought I was. When I retry a drug that I was on before, they don't work. Methotrexate may work for me again since I stopped it before it stopped working.

I hope that these meds work better for you. Did he put you on Folic Acid? Do you have Diabetes also? Or is he just afraid that Pred will cause you to become a Diabetic?

Did your Rheumy tell you the name of the new drug that is coming out soon. I hope that it is not a biologic.

Have a Good week-end! Gentle Hugs to you!
Posted 4/20/2019 1:23 PM (GMT 0)
He told me the name of it but for the life of me I cannot remember it. He did say it was by the same folks that made I believe humira but he said it’s a totally different drug. I do take a 1mg folic acid prescription strength have for many years. I don’t have diabetes but prednisone does tend to make it to up a little and diabetes runs high in my family. My mom is insulin dependent she takes 5 shots a day. He is aware of that. He will recheck me in one month to be sure my liver is doing good with the methotrexate. He is an awesome doctor. He also took care of my husband and he loved him. He said he was a character. My husband passed away the day after he had seen Dr Mossell. It really upset him. He told me he tried to come to the funeral home for visitation but he just couldn’t come in. He said he didn’t do good with things like that. But he said he was so very sorry. He is a good man and he has been so good to me. Anyway praying that this combo will work.
Hugs and have a wonderful Easter
Peggy
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