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tonyanmark posted:
I am new to all of this, I have RA and AS. I have been on embrel, which didn't work out for me. I am in constant pain and finding a dr in my area that I like has been hard. The dr that put me on embrel was not a nice person and felt no empathy for me, so I am looking for a new dr. I am still trying to get over the its not fair part and trying to work and keep my house when all I want to do is stay in bed.
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LCover responded:
Hi Tonyanmark,

I was diagnosed last June with RA and I understand how frustrating all of this can be. Finding the right medication is a huge challenge especially when you know the side effects. Another challenge for me is finding information because I don't get very much from my doctor (my husband is ready to take the computer away from me! ) We have two RA docs in my area and I was almost ready to go out of state to get treatment.

Enbrel didn't work for me either...I felt horrible for the three weeks I was on it. I'm on Simponi now (since January) and it seems to be working much better.

It's frightening in the beginning but eventually I had to come to terms with it and realize...it is what it is and I don't have control over it. However, I do have control over my mindset and on how I want to treat it.

I also had a lot of people tell me to cut myself some slack. This is a tough diagnosis and you are just starting to learn about it. Give yourself a break...you need it after being diagnosed with such challenging diseases. This forum was helpful when I was feeling my worst. It helped talking to others who can relate and reading their stories. I hope you are able to find some solace in it too.

Take care of yourself, get rest and know that you will find the right doctor and meds to help you feel better.

Good luck to you,
LC
 
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lsrs5356 replied to LCover's response:
Hi, Tonyanmark,
I, too, was just recently diagnosed (2 weeks ago), although I have been having symptoms since September. Initially I sought treatment with an orthopedic, who was great but then referred me on to a rheumatologist. I initially tested negative for RA; later tested postitive. I love the rheumatologist that I have; he spent an hour with me at the time of the initial evaluation, and his nurses are great also. I have been started on Arava; no results as yet. But I was informed that it could take up to 2 months before I noticed a difference!!
This is really hard on me because I am a nurse and use to being on the other side - being the caregiver, not the patient. I wake up in pain every morning; it takes 1-2 hours before I am able to start the day. I wake up during the night if I pull on pillows or covers - my hands are terrible. This is even hard to type.
I have a wonderful husband (always, not just now with the RA diagnosis) who does "everything" for me that he possibly can. I, too, have been reading everything that I can find on this site about the RA. I will say that researching RA has been both promising and scary. So many stories about meds not working, horrible side effects from the meds, etc. I just trying to take it one day at the time; rest frequently, and not overdo anything. I am hoping the meds make a big difference soon.
Be patient, keep on reading, and hang in there. But, if you are not totally happy with your rheumatologist, look for someone else. That is extremely important!!
Keep me informed.
 
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sherrie60 replied to lsrs5356's response:
It's amazing how similar all of our stories are. I was diagnosed in October. Cardiologist found a rheumy for me (I love her). She says she is hitting it hard in order to keep me working. (Sounds ominous, doesn't it?) I am on the usual drugs...plaquenit, folic acid, prednisone, methotrexate, and Enbrel. This is the third month on Enbrel (she said that sometimes it takes three months to "kick in") and it is not working so will change it next visit.
I do the same thing at night...wake up hurting because I have moved and grabbed my pillow or sheets. My Cavalier King Charles Spaniel Ruby molds her warm body to mine so it is like sleeping with a heating pad where ever it hurts! I had to change to a lighter bedspread because the other one was too heavy and hurt my hands to manipulate.
I am also a nurse of 31 years and teach RA in our RN nursing program! It puts a new perspective on it when you live it.

Sherrie
 
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lsrs5356 replied to sherrie60's response:
Seems as though we are in the same boat!!
When do you see your rheumy again? I see mine again in May. I was only started on the Arava - my MD said that med would give me the best results, at least initially, with the LEAST side effects!! That is so scary. I have felt awful, in addition to the RA symptoms, from the med. I can't imagine what the side effects would be if I were on multiple meds!
Let me know how you are doing, or if you have questions or information.
Good luck!
 
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Jes67 replied to LCover's response:
How do you know if a med is working?When I first was diagnosed my Rheumy put me on Prednisone to get me thru Christmas and I felt "cured". Then he took me off that and put me on MTX for 6 weeks and now Embrel with the MTX. My pain is about a 2.I will start the Embrel in 3 days when my MTX injection is due. So should my pain be suddenly gone if the Embrel is working? My Rheumy says my RA is very aggressive and hes going to hit it with everything he's got but when I read stories on here I feel as if I am having great results with just the MTX. Maybe my labs are telling another story? I almost feel guilty that my pain is so diminished and others can barely walk.
 
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lsrs5356 replied to Jes67's response:
Hi, Jes57 I'm new to RA. I was started on Arava about 3 weeks ago, being informed that it could take up to 2, or more, months to get any results. To date, no results, except a mild reduction in the amount of stiffness in my fingers first thing in the morning. I still have all of the pain, swelling, warmth. I don't know about the meds that you are on - has your rheumy told you about how long it would be before you should expect any results from the Embrel? From what I have "learned" so far, it takes a while for any of the meds to work; except maybe for the Prednisone. I just don't know. I am learning as I go - there is so much to try to learn not only about RA, but about all the side effects or complications from the treatment. Are you having any side effects from the meds so far?
If you have ANY questions at all, call your rheumy or his nurses; ask them anything that you are in doubt about. If necessary, make an appointment with the MD, and discuss your concerns. That's what I have done so far, and it's only been 3 weeks.
Keep us updated on your status, and, with any kind of information that you might learn. I am very open to anything I can learn about this awful disease.
Lila
 
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sherrie60 replied to lsrs5356's response:
Hi, I go to the doctor this afternoon. She said that she will change the Embrel to something else since we gave it three months to work and it isn't doing the job. Evidently, three months is the magic number for Embrel. Plaquenil was supposed to take four months. I don't know about the Methotrexate. We keep going from 0.7 ml to 0.8 ml injections aloing with the Plaquenil, Enbrel, and Prednisone. I didn't ever think I would say this, but I love my Prednisone. When ever we try to wean off of it, I start hurting badly. I guess that means that nothing is working? It's a good think I'm trusting my doctor to know what she is doing. She is a rheumatologist specializing in Lupus, Fibromyalgia, and RA. I love her.

I think we are all learning as we go...and we are learning the most from our interactions with each other!

Sherrie
 
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Jes67 replied to lsrs5356's response:
Started Embrel (injections) last night so far so good, have been on MTX for 6 weeks, no side effects so far. One problem is that I have osteo (bone on bone) in my right knee and have been limping and in severe pain from that for 8 years( Im not one to go running to doctors) so that any other pain I have been having is minor compared so it is hard for me to rate my pain or even care about the stiffness and things from the RA. Planning to have a knee replacement this Summer. I am an RN so I see things from "the other side" and see just how much doctors dont know and sometimes dont care. That is why I never got my knee checked out until the RA started. Am now taking my health seriously and have chosen a PCP from the doctors at the hospital I work for. But even tho I chose the best doctor (I felt) for me, I still have to take my health in my own hands and make calls to the clinic that it is time for my labs and to "remind" him of things he is supposed to be ordering and doing for me. The clinics force the doctors to take so many patients that we just become a blur to them. Good luck to everybody out there living with this.
 
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sunsideup replied to sherrie60's response:
I. Love. Prednisone.

Is it really that bad?
 
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sherrie60 replied to sunsideup's response:
I went to my rheumy and she upped my methotrexate to 0.8 ml for the next two weeks and 0.9 ml for the following two weeks...then I see her again. The prednisone is down to 5 mg every other day. And, of course, plaquenil...I forgot to ask her why I'm still on that. Next time. I did make a med card with everything I take on it along with questions. I changed dosages, etc as she talked and checked off answers as I got them. I like this method best for me. I'm a nurse and really should remember everything, but I'm worse than the rest when I'm the patient!

I asked her how will I know when I'm getting better and that it was all a blur and I was making this up as I go. She showed me my record in her computer. You know the questionare that you fill out before each visit? They put that information in a graph and it shows your progress. Also, your monthly lab results and how many painful joints you have all calculate in on the final "how am I doing".

She said that the maximum dose of methotrexate is 1 ml (25 mg) a week...and that the biologic meds (Enbrel, Humera) work in direct relation to how much methotrexate is in your system. She did tell me in the beginning that these meds may take up to four months to work. When I reach the maximum dose of methotrexate, and the Enbrel is still not working, we try another biologic. We will go down on the methotrexate again and gradually work our way up to maximum dose (if need be) along with a diferent biologic. Now this makes sense to me and the pressure is off of me trying to decide if I'm "better" or not.

Prednisone is for inflammation and is good to get through the bad times; however, it has too many long-term side effects to stay on it too long. For instance, I'm on it too long at six months. You cannot simply just "quit taking" it, we are tapering off to every other day .

I hope this helps you all.

Sherrie
 
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lsrs5356 replied to sherrie60's response:
Glad you got to see your doc. Even though I am a nurse, this is all so confusing to me. There are so many sides to the RA, so many meds, so many side effects!! It is exhausting just trying to keep up with it all.
I've been on the Arava for 4 weeks - little relief with the exception of some relief of the stiffness upon waking in the morning. Other than that, not much else. However, I stay slightly nauseous, have mild diarrhea, am dizzy, short of breath, have mouth sores, muscle aches, headaches, the list goes on. And, again, my rheumy said it would take at least 8 weeks for me to ge the full results from the Arava. I see him again in 4 weeks. I'm not sure what will happen then.
Let us know how you do with the increased meds.
Good luck.
Lila
 
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sherrie60 replied to lsrs5356's response:
You are right...being a nurse doesn't really mean a thing when we are also the patient. I even teach this mess in nursing school!!! I thought I understood it, but there is so much more to it than the textbook S&S. Now I begin each lecture with "does anyone have this...or do you know anyone who has it?" There is nothing like personal experience. I wish I could go back and just teach it from the book! Now that my methotrexate is increased, I'm just waiting for my hair to fall out!

Sherrie
 
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lsrs5356 replied to sherrie60's response:
Oh, I hope that you don't go through the hair loss!!! That would be terrible. However, I've read about a lot of people at this site that are on Methotrexate and have lost their hair. What an insult!! I had cancer in 2004, chemo, radiation, and lost some, not all of my hair. It was not a pleasant experience.
Hope to soon hear good results from you regarding the increase in your meds.
Good luck, keep us posted.

Lila
 
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sherrie60 replied to lsrs5356's response:
I fell asleep in my office yesterday afternoon. Good thing I had shut the door! I can't seem to stay awake. If you don't hear from me in a couple of days....it's because I'm asleep!!!!

Sherrie


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