Do I need to be referred to a Rheumatologist ?

[carrie67]

Hi

I have had Discoid Lupus ( officially diagnosed ) for 10 years.

Have been suffering from fatigue for a few years and muscle pain for as long as I can remember, but now my memory and concentration are becoming really bad.

Told my dermatologist about tiredness and memory a year ago but she did not know if they were related.

Finally plucked up the courage to see my GP this week, bored him to tears with all the different symptoms, he was very understanding and gave me a course of Prednisolone 40mg a day for 10 days. What a difference, knees still paining but I have energy at last.

My latest blood tests show my ANA is neg but ENA is positive. Anyone know what ENA is ?

The doctor said see how I feel after taking these and said I may need referring to a Rheumatologist.

Do I really need too ? Don't fancy sitting around in hospital waiting rooms, and at the end of the day will they be able to help ?

I take Mepacrine at the moment and Elocon for my scalp and skin both seem to be working well.

Has anyone out there got any advice, love to hear it.

[Hidden]

Hi carrie it does sound like a good plan to see a rheumy consultant he may not need to see you that often but the do treat pain and try to treat fatigue with different meds. You can always stop going if you don't find it helpful but it may make a real difference. But why not try it I know hospital is boring but you may feel tones better with a bit more treatment. Good luck

[carrie67 in reply to Hidden]

Hi Tatty

Thanks for your advice.

[Jestina77]

I have also been diagnosed with lupus for the same or more years. you are the first person i have read that has also been precribed Mepacrine.

It appeared to have exhausted its use as my scalp had more lesions appearring, a couple of them like blsters and painful so we are in the process of checking my eyes pre change over to Hydroxychloroquine.

Wish I had advice to give.

Currently fighting with my place of work to recognise, i am unwell and to stop stressing me.

[ROSCHELLE]

I, have also been diagnosed with lupus for about 3 years, which is causing my medical drs difficulities due to the fact that I am allergic to all types of medications. My lupus is flaring up extremely bad that medicine is had for me to obtain. I have noticed that my body is tolerating my blood pressure medications but still there are days that it does not. So far I am in remission, so I take it one day at a time. From all of my classes and books I hope that this info will be of help.

There are many types of antinuclear antibodies (ANAs). One class of ANAs react with cell components that are extractable from the nucleus in a certain solution in the lab. These are also referred to as extractable nuclear antigens. The ANA antibodies that bind to these ENAs are called anti-ENAs. Examples of anti-ENAs include SSA and SSB antibodies as well as RNP and Sm antibodies.

The ENA screen does not "take the place" of an ANA screen. Rather, ENA antibodies are subsets of ANAs. Sjogren's syndrome is commonly associated with SSA and/or SSB antibodies. These antibodies can also be present with other rheumatic condtions.

[Hidden]

Hi Carrie ,,Hey i was diagnosed DLE last August after having skin like a leper for 3years!

The previous years before that i wasDiagnosed with Livedo Reticularis,,another condition that affect blood vessels hence making skin appearance look aweful!,I too have suffered chronic,muscle,joint pain for prob 20years now.When i was referred to the rhuemy,,they explained i also have Fibromyalgia which gives the same problems asLupus,,Chronic fatigue,,pain in muscles and tendons,,they also explained a condition called Mixd connective tissue disease,,this explained why my tendons and such just give way and seem to snap for no reason,,sometimes leaving pain for weeks,,other times gone in days!!

Was the Rhuemy that sorted all this..although my dermy is very good.I would say you should request an appointment to see one asap!

Can i also ask with DLE,,why are you not on Hydroxy/Plaquenil ? Hey ,,this helped my skin with spots,boils,rashes such alot,,i now hav alot of scaring and still looks yuk but i have taken this for 8months now,,nearly came off a time or too but have stuck with it and glad i did!Good luck pet.P.s,,i l have Paul on my case again for this,,but we started a group at Facebook,,it called Lupus is real!! We support each other and are like a big lupie family.Look us up ! x

[Jude65]

Yes, I would say go and see a rheumatologist. It is good to get another opinion.