Wellness

[cherry]

@LilacTree   I do not think that you are deliberately wasting anyone's time ,nor playing games

I think you are just plain scared, and it is holding you back. Fear is a terrible thing and it does paralyze people

I do think you are going to find the courage to  get more help with this Dr, because you are reaching out

Just don't scare yourself with online  opinions. The only opinion that matters is ,yours and your DRs

Be well. I will keep you in my prayers

[NYC Susan]

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@LilacTree wrote:

Thank you everyone for your helpful responses, both pro and con. I plan to see this doctor and discuss my issues and listen to her treatment recommendations. I will come back to this thread after that and let you know the outcome.  You deserve that.  Until then, I won’t be revisiting this thread.  I appreciate you all for your time and concern.  You are amazing.

As always, Lilac Tree

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@LilacTree, I know how frustrating all of this can be.  Please do come back and let us know what the doctor recommended and how you've decided to proceed.  Wishing you all the best!!

[LilacTree]

UPDATE:

Just to advise you all that the rheumatologist and I agreed to start me on Plaquenil, a DMard medication, and start the taper off prednisone.  I will see her again in three months unless there is a reaction to either of these modalities before then.

I like her very much and am happy to finally find a rheumatologist who is willing to work with the patient.

I feel relieved and very lucky.  Thanks again to all of you for your interest and comments.

[cherry]

@LilacTree  I am so glad you are giving her a chance. Prednisone  is something I will never take again. I tried it once and had such a terrible reaction

[LilacTree]

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@cherry wrote:

@LilacTree  I am so glad you are giving her a chance. Prednisone  is something I will never take again. I tried it once and had such a terrible reaction

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@cherry 

Im hopeful for an improvement.  Thing is, it takes these rheumatoid meds so long to work, but at least I have started.  Prednisone has been both good and bad for me, but I’m very hopeful that I will be successful in getting off it.  It will take a year or more of slow titration.  There is, of course, no cure.  But there’s some hope for a more comfortable life, and that will be fine with me.

[cherry]

@LilacTree  your stomach might get better  once you are off that

[pigletsmom]

Glad you're liking this doctor. Hoping the new medication works out for you.

[Pqfan]

Thank you for the update and wishing you lots of happiness and days of feeling better.🙂🌸🌸🌸

[LilacTree]

Another update:

I saw the rheumatologist two weeks ago. We discussed meds and we agreed to start with plaquenil, a much milder med than ritoxen, which is one of the last biologics prescribed as it is so toxic and usually used as a last resort.

I did okay until three days ago when I woke up in the morning “paralyzed” with acute pain.  I literally could not move any part of my upper body, and I had severe itching that I could do nothing about.  I actually thought I could be dying.  I moved my legs, and little by little my upper body began to wake up. However, the pain was still horrendous. It was too early to call the doctor, so I took my usual Synthroid and kept sipping water.  

Finally at 9 am I called the doctor’s office and left an emergency type vm.  I was called shortly afterward by an admin and explained my situation to her.  About an hour later she called me back and told me doc said not to take the plaquenil and increase my dose of prednisone from 7mg to 10 mg. Within another hour, the gross pain was decreasing and I was back to normal pain levels, at which time I could take care of the itching.  Unfortunately, my next appt with her is in September.  I called her office and was put on the waiting list for cancellations.

One thing I have to say is prednisone may have its drawbacks, and I have some of them . . . But as a painkiller it is a miracle.  I can’t think of any other med that could have brought me back to my normal so quickly. And I have stayed the same the past two days.

Back to square one again, however.  Wish I had better news.