So upset, I have RA too!!!

[Deb 27]

Well, so it turns out my former rheumy was right, I have seronegative RA. I had my rheumy appt with the ARNP today and she told me my x rays from December (yes, you got it, they are almost 4 months old) were positive for RA. I am angry b/c nobody called me yet to tell me. I had to wait almost 4 months to find out. Does this seem odd to you all or is it just me???

The ARNP said since my lip biopsy was positive, they are both primary diseases.........

She also said they do a yearly screening for lymphoma. Does this worry others as well? It's kind of scary!!! I could deal with the RA and SJS but the worry about the lymphoma is scary. SHe said they do protein electrophoresis and urine electrophoresis. Has anyone else had this? Ugh!!! I can get anxious easily. This is tough........

And, she didn't up my plaquenil. I am just on 200 mgs. Aargh!!!!!!!!!!!!

[eye2dry]

My condolences to you Deb on finding out you

have RA as well. I have RA as my primary and sjogrens as secondary.

Since your xrays showed evidence of RA no doubt you'll be put on

additional medications to stop any further damage. Usually they start with methotrexate

along with the Plaquenil

I am on 3 medications for my RA now...Plaquenil...methotrexate...sulfasalazine



As far as I know, I am not being screened yearly for lymphoma. When I was first diagnosed over 4 years

ago he mentioned the autoimmune disease "slight" increase for possible lymphoma in

the future. I worried about it at first, like you, but have since mostly forgotten

about it.


Hearing you had RA was shocking wasn't it ? It'll sink in and you'll accept it

and you'll tackle it with your rheumy.

Keep us up to date on what the plan will be for your treatment.


take care
shelly

[cccourt1942]

Deb,
    I can be corrected, and often am, but I am of the understanding one or more autoimmune with SjS makes you 2ndary, not primary.
    "Fear of lymphoma":  I have been thru this.  The way I got over this is repeating what my diagnosing rheumatologist told me regarding the incidence of that in SjS:  He told me this story-"I have had two patients with lymphoma.  One started with me with lymphoma; she died.  The other was early detection; she is fine."  When I have told this story people say, how old was this dr?  25?  Well..he is young...about 40.  He says the yearly test (I am so sorry I can't recall which one) done on us gives us early detection.  It's what worries me with SjS persons who don't have severe sicca symptoms and they go off and sort of forget about SjS...for years.  If for nothing else, they need to have the (it's really not lymphoma screening) test which detects the possibility of lymphoma.  It is the urine test though.   

     Now, as to the delay in giving you the test results, that is shoddy.  I presume the ARNP is a type of Nurse Practitioner:  if so--the physician might be the person to do this (under whom she/he works).  It is pretty bad tho.  (or at least to you and me)
      Palms up...breathe...and think calming scenarios!  (I know...easier said than done)
  Have a calm day.
c3

[irish]

That is right. Two autoimmune diseases including the Sjogrens makes it secondary. I had Sjogrens diagnosed first as primary and it is not secondary to Myasthenia gravis and hashimotos.

Also, there is a chance of lymphoma, but it is not worth wasting energy worrying over. It doesn't happen that often. Just being aware of the possibility and watching for symptons puts you ahead of the game. The type of lymphoma that is the most common with autoimmune diseases is the type that responds to treatment quite well.

Yes, all autoimmune diseases are at higher risk of lymphoma. My hubby had celiac sprue and a type of colitis and he was high risk for lymphoma. Never had any problems though after 36+ years of autoimmune disease. Irish