I saw my regular rheumy this am. She was actually very nice. I gave her the run down of the U of M and she just shook her head. She said that she does believe that I DO have seronegative ra with very active secondary fibro. She said I should NOT stop the humira, especially since I have been having so many issues with the uvieitis. She said that I should stay at 4 mg of prednisone because I have so much swelling. She said that once you get below 5mg of the prednisone that the long term side effects are greatly reduced.
She agreed that my hands are very swollen but NOT swollen at the joint like you would see in the classic ra patient. She feels most of my symptoms I am having right now are from the fibro. She asked me to try the lycria again. I tried it back in January but we started at a higher dose and it made me feel ill and didn't seem to help much. Apparently, Lycria was just approved in the use of fibro and a lot of reports were released. It is now believed that fibro patients respond much better when started on a low dose and slowly work up.
She gave me a 3 month supply, the first month I will be on 25mg, than 50, than 75-she had samples so I don't have to spend money to try it. She will see me again in 8 weeks to see how I am responding.
She wants me to get an appt with my gp to discuss my blood pressure and my racing heart. I get episodes that seem like a panic attacks but without the panic. My heart speeds up, I sweat and get shaky and nauseous. She mentioned POTS, forget what it stands for but I do seem to have a lot of those symptoms. She also wants me to discuss the pain I have been having in my bladder, she says it sounds like I have interstitial statis.
All in all, I feel pretty good about the appt. She had shown me articles she had torn out of journals and told me that she does think about my case often.
I am having problems getting my blood work from the u of m and she told me to just have them send it to her and she will make me copies of it all and that she wouldn't do blood work until she got those so as not to repeat tests and run up my co pays.
So, I will go home and do my weekly shot of humira tonight as I usually do it Thursday mornings but wanted to wait until I spoke with her before taking it or stopping it. And, I will call my gp. So, I guess I am right back to wear I was with the sero negative ra dx! I have had so many tests and pretty much everything else has been ruled out so I will just try the lycria and see what the gp says and see the rheumy again in 2 months.
It sounds like you have a good doctor their Michele. I'm glad that she's listening to you and that's cool that she's thinking about you even when you aren't in front of her. I hope the Lycria (I haven't heard of that one) works for you with the lower dose. Now go make that appointment with your GP!!!!
Michele, it sounds like you have a good rheumy. She is listening to what you have to say and is including you in the decision making - that is wonderful! She sounds like a keeper. Interstitial cystitis, if that is what she thinks you have, can be extremely painful. Are there tests or treatments for that that are different from what you are doing?
All in all, great appt! congrats....
Great appointment Michele! I'm so glad it went well for ya. I know you've been in a battle. I have Fibro too so what is this Lyrica supposed to do? I've seen it mentioned time or two but didn't really pay attention. My BadLyrica has been so helpful to me, but you absolutely MUST go slow getting the dosage up. At one point, we raised my dosage and I had to go back down again, but then later was able to successfully go up. It's not easy and it really zoned me out while I was getting used to it, but it's been worth it. Also, don't stop it suddenly. I had an idiot infections specialist who decided my FUO (fever of unknown origin) was a reaction to Lyrica and had me stop it cold turkey. Not fun, and not helpful. I think the FUO was just from the fibro and pain, maybe the RA (symptoms were just starting at that point).
Mona, Lyrica is an anti-neuropathic, so it treats nerve pain, which I have in addition to the fibro. I'm not sure what it's supposed to do for the fibro directly, or it's just that many fibro patients have nerve pain.
Michele, I'm glad she gave you the samples and is holding off on the blood work. It's good to have a doctor who realizes you don't have an endless pot of money to spend on healthcare.
But definitely follow up with the GP about the other symptoms. It would be so nice to get everything treated and get you feeling better!
I am so glad to hear of your positive appointment. You deserve it. Interesting about the Lyrica. I am crossing my fingers that this will help you.
Michele have you ever had mouth or genital sores? Some of your symptoms fit Bechet's Disease
http://en.wikipedia.org/wiki/Beh%C3%A7et%27s_disease
She did mention bechets disease this morning however, I have never had mouth or genital sores.Hi Michele, My rheumatologist gave me samples of 75mg. Lyrica yesterday, just to try, one at night only.
I took one last night and had exactly the symptoms you described. Did not sleep at all, felt dizzy, my heart beat fast, very shakey, nauseaus, and light-headed. There is no doubt in my mind that it was a reaction to the Lyrica. Personally, I will never take it again. It might have been an interaction with my other meds, or whatever. But I never want to feel that bad again. I really thought I was going to just lay there and die, but I was so wigged out it didn't bother me, and I didn't want to wake my husband. He does so much for me, I didn't want to wake him up to see me like that.
I was better this morning.
I really think it might be the Lyrica for you, too. Making you feel sick, etc. Of course, I am not a doctor, so I'm sure she knows best. Did you have those symptoms before the Lyrica or just since you started it? Except the bladder pain, of course. That sounds like it is definitely something else. Those can be horribly painful, can't they?
Has anyone else had this reaction to just 1 Lyrica?
Your rheumy sounds very involved with your case. I think she is going to do all she can for you. You are very lucky to have her.
Hope you start feeling much better, under her care.
Gentle hugs,
Nini
Nini, it is strong medication, and it's a shame they didn't start you at 25 or 50 mg. My early side effects were sleepiness and light-headedness, just a general zoned-out feeling. I don't remember how much I started on (it's been years), but I'm currently up to 150 mg twice a day.
Innerglow, wonder if the Lyrica would help with my sciatica nerve pain in my back, hips and legs? What were your reactions to it at first? Thanks
I was on it back in January and don't remember the dose but yes, it made me feel horrible like that. I gave it a few weeks but just couldn't handle it anymore. I am hoping that staring on the real low dose and taking it at night will help lesson the side effects. I am sorry you reacted so badly to it, did you call your dr and see if they can give you sample of the 25mg to try so you don't have to spend more money until you know if you can take it?
oops posted at the same time Michele and Innerglow.
Well, thank god for a bit of doctor sense, must have been the day for it