Hi. I am not on this site often but when I am it is overwhelming with the love and caring. I am so frustrated because I have been seeing this doc since June and do not feel any better from the RA. I am so exhausted all the time, especially after having the grandbaby and I am only 50. My doc first tried Methotrexate and I got horrible headaches so could not take it. In Dec. I started Sulfasalazine 500 once a day and then in Jan. 2 times a day. She reduced my Prednisone to 9 mg from 10 mg per day. And when I visit her she asks how much pain am I in and she never seems to like the answer. It is either, that is a separate issue or you have such a sensitive system we have to go slow. The pain at times is so unbearable and I get so miserable. I guess I need to know I am not alone.
Has anyone felt hopeless when the meds just do not work? What do you do?
- Asked
- 11 Mar 2013 by Retiredelfin
- Updated
- 15 Mar 2013
- Topics
- rheumatoid arthritis
Responses (4)
Hello retiredelfin,
I do not have RA but I feel very bad that you've had no replies. It sounds to me like your Dr is not being sensitive to your pain, whether she "likes" your answers or not. Is your Dr a specialist? With this diagnosis you'll need someone with whom you can have good communication. Maybe it's time to find a new Dr. I just switched from my old Dr to another Dr in the same practice and I'm happy that I did. I never felt I was communicating well with her and she was rather dismissive with what I told her. Sometimes we must take our health care into our own hands. Are you able to see/enjoy your grand baby? I too have my first. She is a joy. Please let us know how you're doing.
Regards,
4N Substances
Perhaps you should ask for a referral to a pain management specialist. I see both a Rheumatologist and a pain management doc. In my case, I was in Pain Management before I was diagnosed with RA but my PM doc gives me my pain meds and the Rheumatologist gives me meds for the RA. I am taking meloxicam right now. Originally she wanted me to try Plaquenil but I read about it and decided I didnt want to try that just yet. I cant say my pain is under control all the time but it is better.
Most of us have felt as hopeless as you have, trust me. I am only 51 and at 48 couldn't handle one more day. I got lucky though, my PM Dr had been on a sabbatical and had finally come back, he didnt treat me like a criminal searching for drugs, thank God and my Dr., truly. He raised hell until I got help.
Im so sorry the Mx didn't work, I feel I am the poster girl for Plaquenil and Methotrexate combination. Your "cocktail" just needs to be found.
I have also found that female Drs tend to be less passionate. I don't know why, I have theories, but what good are theories when you need help now. There is no need for guilt or recriminations, just find another RAologist. I refuse to see any of the female Drs in my PM clinic, they are scary mean!! AND when the medical assistants agree with you, you know you aren't paranoid!!!
Hello srandjlsims. Thanks so much for your comments. I feel lately like "Lets go round and round and see where I stop." I just saw my rheumatologist a few days ago again and she was her normal "blaming" self with me. Not liking my answers. I wanted to cry. She went from saying I should get a second opinion as she was now doubting her diagnosis to sending me for a TB test, upping my Prednisone to 12 mg from 9 mg, upping my Sulfasalizine to 1500mg and prescribing Enbrel and Fosamax. I just got done reading about Fosamax and am not going to take it. I have acid reflux and am also taking 15 mg of Mobic a day. I also decided to not up the Prednisone.
If she is urging a 2nd opinion, then do it!!! I know new Drs are unknown and mostly harsh, but you may get lucky. I am glad you aren't down, exactly.
Prednisone, to me, is like a miracle drug, but the side effects of prednisone scare me more than even methotrexate and plaquenil believe it or not! I am only allowed on it for 3 week cycles and the last one is only because I got really sick and brought on a flare-up. Its amazing what I can accomplish on the prednisone!!
Anyway, as long as it works and doesn't start problems, fine, just make sure you get another opinion.
Im rambling again, I had my almost 3 year old grandson for 2 days, daytime only at his house, and he is built like a Mac Truck and acts like the Enegizer Bunny and I am napping all day today!! Its a good day!
Good luck!
Hello retiredelfin. I also know what it is like to deal with pain and prolonged illness. Mine started at 55. Currently dealing with shingles. Sort of an icing on the top. But I keep going and keep looking for something to ease my trials. There are many days I wondered why I kept going. They slowly faded and turned into days of enjoying what I do have.
My sister has been dealing with RA and Osteoarthritis for years. Pain management was the best choice for her. The search for an effective drug continues. Some work for a while. Meditation has helped her tremendously at the Pain Clinic.
Prednisone I know well. Your dose is low. Am happy for you about that. Keep searching for relief. Let me know how the clinic goes for you. It will help. Stay strong. We are here for you. Karen
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Hello and thanks for your comments. My granddaughter is 14 months old and I do see her often, usually 3 overnites a week. No matter how challenging she can be I love having her here and teaching her things. My pain has subsided a bit but I think it is due to the weather. I live in the Northeast and it has been crazy weather: cold, then raining then 54 degrees and sunshine. Can't change the weather but I will start searching for a new Rheumatologist.