Hello, I was just reading about your fingers and hands, this is one of the big problems I am having. My hand are so painful right now. I have raynauds and I had nerve tests done and told I have corpuletunal, but my hand are not always bad. I have dejenerate discs and pinching nerves to my hands. Sometimes my fingers will go black, ( after having a smoke) I know I need to quit but just can't do it right now. Getting in a hot tub always makes my hands feel better. I have been taking Plaquenil for about 6 years now but my family doctor took me off the morning one and then last week I ran out of them. I went with out for about 4 days. Is this why my hand have gotten so bad now? I have never been on this site before and I still need to learn how. Sorry If I am not doing it right. Marie
sausage fingers
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Hi Marie and welcome :welcome:
Do you see a Rheumatologist Marie? Most of us rarely make medication changes unless the Rheumy has advised it and for a good reason. I'm not sure why you had to go off the Plaquenil, but there are other meds out there that may help you.
Plaquenil can take a while to get in our system, but there have been quite a few here who can identify with what you are saying. They didnt particularly think it was doing them much good until they actually went off it. Surprisingly too the reaction came quite soon after going off it, when one would think it would take much longer seeing as how the drug needs time to build up in our system. So it could be the cause of your current problems.
Are you able to get some more and start taking them again to see if the problem resolves itself?
love
Lily
Do you see a Rheumatologist Marie? Most of us rarely make medication changes unless the Rheumy has advised it and for a good reason. I'm not sure why you had to go off the Plaquenil, but there are other meds out there that may help you.
Plaquenil can take a while to get in our system, but there have been quite a few here who can identify with what you are saying. They didnt particularly think it was doing them much good until they actually went off it. Surprisingly too the reaction came quite soon after going off it, when one would think it would take much longer seeing as how the drug needs time to build up in our system. So it could be the cause of your current problems.
Are you able to get some more and start taking them again to see if the problem resolves itself?
love
Lily
Hi Lily
Thank-you for writing me Lily. I was diagnosed with Lupus 6 years ago and I have been on Plaquenil the hole time.
I used to drive 4 hrs. every 3 to 4 mos. to a rhumatologist in Salt Lake City then about a year ago I had trouble and went in the hospitle for a week and changed rhumatologists to one that was closer.
He put me on a med. called Azathioprine and I was to get my blood tested from my family Dr. and he would send it up to the rhumatologist.
About 3 mos. ago I went up to the my appointment and the rhumatologist asked where my blood work was and I appolagized and said I had let a couple mos. go by with out getting my blood tested. They told me my blood work that they had from before didn't look good and that I didn't need to make another appointment. I should stay down with my family doctor and that they could not be held accountable. They wouldn't tell me anymore. I cryed the hole way home, its hard to go all that way and expencive.
I'm sorry this is so long.
My family doctor has been taking my blood and says that my bone marrow is very low and he had me stop one plaquenil, I still take one at night and he's put me on prednasone. I just had another appointment today and he is putting me back on a larger dose of prednasone to see if he can't get my blood to look better. He also told me that If I didn't quit smoking that I could lose my fingers.
I would like to find a good rhamatologist that I could see, I know that my family doctor is doing what he can but sometimes I don't think he knows what to do.
I don't know if any of this makes sence I feel like I am just rattling on and I know my spelling is bad.
Thank-you again, I hope you have a good night
Thank-you for writing me Lily. I was diagnosed with Lupus 6 years ago and I have been on Plaquenil the hole time.
I used to drive 4 hrs. every 3 to 4 mos. to a rhumatologist in Salt Lake City then about a year ago I had trouble and went in the hospitle for a week and changed rhumatologists to one that was closer.
He put me on a med. called Azathioprine and I was to get my blood tested from my family Dr. and he would send it up to the rhumatologist.
About 3 mos. ago I went up to the my appointment and the rhumatologist asked where my blood work was and I appolagized and said I had let a couple mos. go by with out getting my blood tested. They told me my blood work that they had from before didn't look good and that I didn't need to make another appointment. I should stay down with my family doctor and that they could not be held accountable. They wouldn't tell me anymore. I cryed the hole way home, its hard to go all that way and expencive.
I'm sorry this is so long.
My family doctor has been taking my blood and says that my bone marrow is very low and he had me stop one plaquenil, I still take one at night and he's put me on prednasone. I just had another appointment today and he is putting me back on a larger dose of prednasone to see if he can't get my blood to look better. He also told me that If I didn't quit smoking that I could lose my fingers.
I would like to find a good rhamatologist that I could see, I know that my family doctor is doing what he can but sometimes I don't think he knows what to do.
I don't know if any of this makes sence I feel like I am just rattling on and I know my spelling is bad.
Thank-you again, I hope you have a good night
Hi Marie,
We don't worry about spelling here
:wink2:
((((((((((Marie))))))))) It is important to have blood tests when taking some of our drugs and just in general to see how we are going. Having said that though I am surprised you were discharged because of this, especially when you said that the Rheumy said your past tests on Aza werent good. Did anyone tell you they weren't good? I'm sure had you known that you would have been more compliant with having further bloods done!
It does sound like you need to find another Rheumy. It was a long drive to see the Rheumy in Salt Lake City but he sounds far better than the one you switched over to. Is there anyone else around near you? Perhaps you could post in Find a Doc Forum here and there may be someone with some suggestions on a good Rheumy.
Aza can cause problems with blood cell counts in some and also liver abnormalities, some people can't take it because of that. It's quite rare for Plaquenil to cause that though, possible but rare, so I have to wonder if there isn't something else going on that your GP has overlooked? The Aza should be out of your system by now and whilst Lupus rarely affects the liver it can and you can get things like autoimmune hepatitis.
I hope that your current regime of Pred is helping and that you are able to find a doc who can handle your case a bit better than the last one It sounds like your GP is trying but is out of his depth. Most of them are when it comes to lupus which is why a good Rheumy is so important. You just have to find one and I'm sure there is one out there, so go ahead and ask around here
love
Lily
We don't worry about spelling here
:wink2: ((((((((((Marie))))))))) It is important to have blood tests when taking some of our drugs and just in general to see how we are going. Having said that though I am surprised you were discharged because of this, especially when you said that the Rheumy said your past tests on Aza werent good. Did anyone tell you they weren't good? I'm sure had you known that you would have been more compliant with having further bloods done!
It does sound like you need to find another Rheumy. It was a long drive to see the Rheumy in Salt Lake City but he sounds far better than the one you switched over to. Is there anyone else around near you? Perhaps you could post in Find a Doc Forum here and there may be someone with some suggestions on a good Rheumy.
Aza can cause problems with blood cell counts in some and also liver abnormalities, some people can't take it because of that. It's quite rare for Plaquenil to cause that though, possible but rare, so I have to wonder if there isn't something else going on that your GP has overlooked? The Aza should be out of your system by now and whilst Lupus rarely affects the liver it can and you can get things like autoimmune hepatitis.
I hope that your current regime of Pred is helping and that you are able to find a doc who can handle your case a bit better than the last one
It sounds like your GP is trying but is out of his depth. Most of them are when it comes to lupus which is why a good Rheumy is so important. You just have to find one and I'm sure there is one out there, so go ahead and ask around here love
Lily
Thank-you Lily
I'm so glad you wrote, so much good info for me. I am going to try to find a new rhym. doctor, the Utah Chapter was going to send me a list but they are all up north so it will be a drive. I do take 1 Aza. pill in the morning 50mg. I kinda think my family doc should have taken me clear off that and left me on the 2 plaqnels. I've been thinking alot about stoping the smokes and the doc wants me to go on this med. to help me stop but it is very expencive. I've got to do it though. The little cuts on my fingers do get infected. Now everytime my hands go numb and hurt, I think I do not want to lose my fingers.
I work the weekend shift at Wal-Mart D.C. and I have a very phyisical job I am throwing big boxes on a line all day long some are 20 to 40lbs I've worked at the D.C for 9 years and I have worked in most departments and I could really go were ever I wanted to. I'm so pig headed, my family tells me to get a easyer job. I started this job a year ago and I am the only female. I know this sounds stupid but I think its my way to say to myself I'm strong health and lupus can't get mehno: (indenial) is that what you call it?
Well my kids just got here so I better run- I sure got some cute grandkids two a two year old boy and a baby girl.
Thanks agian I'm so glad to get to met you
Love Susie
I'm so glad you wrote, so much good info for me. I am going to try to find a new rhym. doctor, the Utah Chapter was going to send me a list but they are all up north so it will be a drive. I do take 1 Aza. pill in the morning 50mg. I kinda think my family doc should have taken me clear off that and left me on the 2 plaqnels. I've been thinking alot about stoping the smokes and the doc wants me to go on this med. to help me stop but it is very expencive. I've got to do it though. The little cuts on my fingers do get infected. Now everytime my hands go numb and hurt, I think I do not want to lose my fingers.
I work the weekend shift at Wal-Mart D.C. and I have a very phyisical job I am throwing big boxes on a line all day long some are 20 to 40lbs I've worked at the D.C for 9 years and I have worked in most departments and I could really go were ever I wanted to. I'm so pig headed, my family tells me to get a easyer job. I started this job a year ago and I am the only female. I know this sounds stupid but I think its my way to say to myself I'm strong health and lupus can't get me
hno: (indenial) is that what you call it? Well my kids just got here so I better run- I sure got some cute grandkids two a two year old boy and a baby girl.
Thanks agian I'm so glad to get to met you
Love Susie
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