[Primrose1960]

Hi everybody,

Just looking for some advice for my first apointment with Rheumatologist on 2nd April.

I was diagnosed with discoid lupus of the scalp and am taking plaquinel twice daily for the last 3 months.

I do have some painfull joints, fingers, elbows and feet and back pain.

I am naturally worried that it may now be systemic.

What questions should I ask? What information should I give? What kind of tests should I expect?

Thanks, any advice that you may have will be greatly appreciated.

Primrose:flower2:

 

[Clare.T]

Hello Primrose

I'd say the first thing to consider is how the discoid has responded to the Plaquenil. There would usually have been noticeable improvement by now assuming you have been careful about UV exposure.

If you had the other possible symptoms before, are they any better at all?
Is there any increase or are they much the same. Are there any possible new symptoms such as greater fatigue or pleurisy. Some new symptoms such as anemia or new or increased antibodies will only show up in blood tests.
The whole gamut of tests would normally be run plus full blood count and a urine test.
There isn't necessarily any hard and fast distinction between systemic disease and skin disease. People with discoid or subacute skin can have other lupus related symptoms even when they have have no antibodies or enough criteria to be classed as having SLE too Even if they have enough criteria for an SLE diagnosis they might not have any organ involvement The disease is the symptoms that are being experienced and it's those that get treated.

The rheumatologist might think another medicine should be added at this point and you might want to ask him about it. He might say that the Plaquenil should be given more time. In your place I would be keen to try to get the discoid well under control even if it meant adding another medicine like Imuran.
Assuming there are no new findings that would definitely suggest starting on an immunosuppressant such as methotrexate or azathioprine ( Imuran) the best medicine to add could be another anti malarial called Mepacrine in the UK and Quinacrine in the USA. It can be fantastic along with the Plaquenil for skin and other so called 'mild' symptoms.
Unfortunately I haven't heard of it being prescribed in Ireland but Joan may have more definite info. Maybe some NSAID would be enough help with the joint aches and pains, although they aren't disease modifying. It can do no harm to mention it to him.

You need to report all health problems even if you think they probably aren't related to lupus.

Good luck !
Clare

 

[Joandublin]

Hi Primrose

The fact that you have already been diagnosed with Discoid and have started on Plaquenil should make this first Rheumy appointment a bit easier for you .

Its important that you take some time now to write down your list of symptoms. You can take this with you as a reminder when you are having your consultation. They will take a full history at any first appointment so expect it to be fairly long - somewhere around an hour or so.

They will also ask questions about family history so if there are any diseases/conditions of particular note in your family, jot them down as well. As Clare says, they should run a range of blood tests including ENA (Extractable Nuclear Antigens) which is a panel of antibody tests which could help in defining systemic involvement. They should also do a Full Blood Count and ESR and CRP (to determine inflammation levels).

They may do a thyroid function blood test and also test your B12 levels. If they dont, I think it would be a good idea to get your GP to order these or you could mention them yourself at your rheumy appointment. I guess it all depends on how 'helpful' the consultant is All of these tests are done through blood so its just one needle filling a heap of little phials. Some hospitals use what is called an 'episode number' which is the reference number for your blood tests. Ask the nurse who is doing the blood if there is a reference/episode number as your GP would like it. What that means is that your GP can ring the hospital and find out the results easily from the pathology lab. It might be useful for you if you are concerned or anxious and your second appointment is set quite far away. Just a hint.....

Finally with regard to the Mepacrine that Claire mentioned, I actually dont know if its prescribed or used in Ireland but I have emailed my Pharmacy this morning and have asked them that very question I will report back as soon as I hear from them.

Best of luck
Joan:rose:

 

[Primrose1960]

Thanks

Hi Clare and Joan,

Thanks for your hints and tips I will keep them in mind.

I have to say that the plaquinel seems to have kicked in, I dont feel as exhausted as I have done in the past. There were days when I couldnt even get out of the car after a days work.

Also the pain in my joints are not so bad. Once I dont overdo things, like housework all day on my day off from work!

I have lost so much hair and find it hard to examine my own head! so its hard to tell if it has improved, my scalp is the only part of my skin that has been affected. On my last visit to dermo he doubled the dose of plaquinel.

I am overweight and I guess the rhumy wont be pleased with that! Was thinking of breaking into the surgery and hiding the scales before my visit?:eleph: But my elbows hurt and my hands dont weigh that much!

My mother had a stroke at 57 never walked again, died of kidney failure at 63. Both my mother and grandmother had RA. And my mother had an underacative thyroid like me.

I am anemic and need to take iron.

Thanks Joan for contacting your pharmasist about meds.

All the best,

Primrose

 

[LolaLola]

Dear primrse, just wishing you luck, and please don't leave the room until you have asked everything you want. Keep your bum on the seat!
x Lola

 

[Joandublin]

Hi Primrose

Juse to let you know I still havent heard back from my pharmacy but I sent them a reminder today.

Cheers
Joan:rose:

 

[Joandublin]

Hi Primrose

I got an answer from my pharmacy. Yes Mepacrine can be sourced in Ireland in 100mg tablets. They are unlicensed here but can be prescribed by a doctor and they would be covered under the Drug Payment Scheme of €90 per month (I presume you are on that scheme?)

Best of luck with the appointment

Cheers
Joan:rose:

 

[BaumshellLupieMom]

Dear Primrose:

Hope all goes well w/your appointment. Don't really have anything to add. Guess I'll see you chat sometime and we can do a formal introduction. And, I'm glad to hear that the Plaq has kicked in and started working. Very good news, indeed. Hugs.

Love -- SusieBB

 

[Primrose1960]

Thanks and happy Paddys day

:luck: Hi,

Thanks Joan for getting that information from your pharmacist.

Thanks for your good wishes Sussi.

Will let you know how I get on.

Happy St Patricks day to you all!

Primrose.