[Salopsally]

Hi friends,
Its been so good to come here from time to time and get your opinions and advice.
Ive posted before about how Im not really on any medication and I have taken this up with my GP who has written to my reumatologist. She seemed to agree with me that maybe a baseline drug like Plaquenil would help.
Had a reply back this week which is good because I think my GP was rather shirty with him because she has to treat me for this and that and never gets a reply back from him which is difficult because of course she doesnt know everything about Lupus.
Well...
He said he agrees I have low grade active Lupus but thinks the exercise hes prescribed will help with my stamina and that a baseline medication would not really be appropriate.
He said maybe could try Methotrexate or Azithoprine but he cant see that it would really help.
Not taking Methotrexate again as ive had it before for the RA I was diagnosed with in the first place and I dont like it.
So...
Hence my heading. Maybe Im thinking it is a balancing act and perhaps he is right. I have SLE and Fibromyalgia. How well can I expect to feel? Im ok. I get by. Im fatigued but Ive adapted my lifestyle to suit. I still have weak legs and walk like an idiot in shoes. But hey.. Im not in hospital.. I dont have organ involvement. I dont have brain fog.
All medications obviously have side effects so Im not getting them anymore. Been on Prednisilone for 3 years and just off them so that must be a bonus.
My joints are up and down for pain and inflammation but I take anti inflammatories here and there and they keep at an ok level.
I think Ive forgotten what normal is over the years. I should feel happy because before I didnt even have a diagnosis and I know lots of you here are still in that position.
Dont think Im looking for any real answers just pondering on the idea that maybe this is the life I can expect now and theres not much more that can be done.
Have to go so will end this rambling post.
You are all so great and its such a comfort to come here and read all your stories and get support when I need it.
Luv Sal xx

 

[Maia]

I'm shocked he thinks you have active lupus and would prescribe methotrexate or Imuran before Plaquenil. And that Plaquenil would not really help, and that you're better off with just exercise he's prescribed! Completely shocked.

Is there a way to see a different rheumatologist or convince your GP to give the Plaquenil a try to see if it helps over the next 9-12 months? Plaquenil is really such a benign medication, safer than many over the counter meds we take every day without thought! The only consideration is routine eye exams.

As to what to expect... most will have an improvement on the Plaquenil but many will still experience pain and fatigue. Some reach near remission with Plaquenil alone and others need additional medications added long term or intermittent prednisone. It's really quite variable, as with everything else with this disease.

 

[Katharine]

To put it simply, I think your rheumy is an idiot and the symptoms you have been describing over these months are not OK at all, by any means!

Katharine

 

[Clare.T]

Hello Sal

That man is a moron or let's say an apparent mix of arrogance and ignorance on an ego trip. Do you want your quality of life in the hands of such a person ? Surely you deserve better than this ? Yes, you deserve the best you can get! Your GP is on your side so use her good will to the max.
All you need is a prescription, for heaven's sake.
The hidden benefits of Plaquenil are quite amazing, an ever longer list and include slight blood thinning, of some interest to you I think?
Most of us are on a junior aspirin too.

There are virtually no long term risks to Plaquenil. Combined with the exercise programme which is brilliant it might be all you need most of the time.

Good Luck !
Clare

 

[Joandublin]

Dear Sally

What a terrible situation to be put in by your Rheumy Its unforgivable that he wouldnt start you on a base line medication like Plaquenil when he himself says you have active Lupus. I can understand that you are confused. After all its not easy 'taking on' professionals and challenging them.

Let me explain how Plaquenil works and that might give you some better insights into what your next steps should be. Plaquenil is a disease modifying drug. Its actually an anti malarial drug that was discovered to have a positive impact on modifying the immune systems of those of us with particular autoimmune diseases like Lupus. Its a slow acting drug that works to change the ph balance of our cells so that over time our bodies limit the amount of auto antibodies we produce. Its these auto antibodies that attack us and cause inflammation, etc.

Its a cumulative effect that builds up over time. Plaquenil is also reported to have some other good 'side effects' like slight blood thinning properties and cholesterol reducing benefits. Its particularly useful for helping those with skin problems from Lupus but not exclusively so as it helps to reduce joint inflammation also.

Generally speaking the standard of treatment for Lupus will be to start with Plaquenil if the patient has no contra indications. If Plaquenil alone is not sufficient to get the disease under control then other medications may be added. Sometimes this might be prednisone or medications like Imuran for example. Sometimes other anti malarials like Mepacrine will be added into the mix before these 'second' level meds are tried.

The whole thing is a bit of trial and error to some extent to see which particular cocktail of meds will suit. Many people however do very well simply on Plaquenil and never need to take other medications. Other people may still experience temporary flare ups and may need additional medications to control and dampen down the flare but all the while they will still be on Plaquenil.

The good thing about Plaquenil is that is has very few side effects and is a very safe, tried and tested drug. The main thing that needs to be watched out for is possible retina problems. While this is very rare it is nonetheless serious so getting regular eye checks is important while you are on the drug. Regular eye tests here in Ireland mean seeing the Opthamalogist about once every two years at this stage.

At the very least Sally I think you should be offered the opportunity to try this drug out to see if you can benefit from it. Its far, far safer than long term prednisone and doesnt have the potential to cause bone damage and other complications like pred can. It may very well be that it turns out you need more than the Plaquenil but you will never get a chance to find out until you try it and see if it helps.

Also Sally (and I dont want to be alarmist but its important that you understand) it might well be that you can rumble along and 'manage' your symptoms for a long time. However it might also be that your Lupus can start attacking vital organs and do irreperable damage while you are not being treated with any disease modifying drug. The whole idea of Plaquenil is a bit like an insurance policy. It helps to keep the disease under control. No one can tell for sure what part of us is being attacked and sometimes its only when a lot of damage is done that it becomes obvious.

I hope between yourself and the GP you can work out what to do. Maybe its time for fresh eyes to look at your case if thats possible? I wish you the very best and I completely understand how difficult all this is for you. We depend on the medical profession to guide us but in my humble opinion I think your Rheumy is not guiding you appropriately.

Lots of love
Joan:rose:

 

[LolaLola]

Dear Sally, I am sorry you have to contend with this. You really do need better treatment especially as you need to work for a living. Please don't just accept this second rate care.
x Lola

 

[Salopsally]

Oh my goodness!!!
Im surprised by your reactions. Thanks all of you for your help. Now Im all thrown out again. Id just decided to call it a day and accept this is as good its going to get.
The slight blood thinning affects and the cholesterol lowering would seem a benefit yes.
I dont have APS but I have had a DVT and also high cholesterol. Also a raised or positive di dimer which Im not sure what that means. Always raised ESR of course.

His words were...' I find it difficult to see a case for disease modifying therapy or indeed re -introduction of steroids. Hence the emphasis on exercise to improve stamina. One could consider introduction of agents such as Methotrexate or azathioprine or cyclosporin but I am not certain of how that is likely to help her overall condition.
He also said... 'there is no doubt in my mind she has low grade active lupus. There is equally no doubt in my mind that this is contributing to some of her symptoms. However as far as I can make out she is no worse off the steroids pretty much as she was when she was taking them and certainly I dont not think her blood tests incicate that we are overlooking severely active inflammatory disease or indeed organ threatening diesease. '

Hes not done any blood tests himself at the last 2 visits. (Which were about 8 months apart) Just the first one when I got diagnosed 6 months before that although I have had a few blood tests done at the doctors when Ive been about symptoms here and there.

Not sure where to go from here but I will be making an appointment with my GP (when she gets back from her holiday) I will discuss this with her and see what she thinks.

I am unsure of how bad I am myself. You know how you get used to not feeling on par and then after a long time it gets to be the norm.
I run my own business from home so do manage to arrange my time a bit around how I am feeling. I can have a sleep in the afternoon if I need it and I can sit down between jobs etc.
If I worked for someone else in the workplace I dont know how I would be able to cope then.
I dont have a partner either and I often think. How would I cope if I did have one. With this fatigue, joint pain and lack of stamina how would I manage to sustain a relationship.

With what youve all said about Plaquinel I would have thought it would have been worth a try to see if I felt better. And also it would be a good time now to start it while Im not in a massive flare I would have thought. I have had massive flares in the past so will he just wait till that happens again and then slap me back on the Pred as it will be the only thing that will work instantly.
I thought maybe its because its a very strong body altering drug with lots of side effects and hed rather not put me through that if Im sort of ok. But you all seem to think its a fairly harmless drug with minimal side effects.

Im just thinking aloud really so thanks for reading.

It never ceases to amaze me how unforthcoming an appointment with a specialist is and how enlightening it is on here.

Hes not a Lupus specialist though. Most of you are. Well at least you understand where Im coming from.
Thanks again.
Luv Sal x

 

[Maia]

I do understand that feeling of wondering... is this as good as it's gonna get or as good as I can expect to feel? Would I feel better if I went on an additional medication and is it worth the risk/side effects? I myself wonder sometimes if I should be put on additional disease modifying medications beyond the Plaquenil with occasional use of prednisone. I am definitely not symptom free while on Plaquenil, and have flares much like you describe. But I have improved with the Plaquenil in many ways nonetheless.

But in your case, with a diagnosis of lupus and not on ANY disease modifying medication, it is just so obvious that you need to be put on Plaquenil. Give it a try, hopefully your GP will prescribe it to you if there is no other rheumatologist that you can see. It is absolutely mind-boggling to us all (I think) that you have not been put on this medication yet with a systemic lupus diagnosis.

 

[lazylegs]

Hi,

When you see your doctor next bring the article Clare posted. It was presented at the American Rheumatology Conference just a couple of weeks ago. The article may help lean the doctor in the direction of prescribing Plaquenil.

http://www.docguide.com/news/content.nsf/news/852571020057CCF6852574F100644680

Take care,
Lazylegs

 

[Salopsally]

Well...
Thankyou all. Youve been so helpful. Ive been to the GP today and she agrees with me and you that the Rheumatologist isnt being very helpful. She doesnt know a lot about Plaquinel but I have showed her the report you suggested. She is very interested to learn and is going to make it a mission to get some answers for me even though this particular Rheumatologist isnt very forthcoming.
Shes thinking of referring me on to another one or.. London because she doesnt think I am getting the best care either.
As soon as I walked in today she said ..Oooo you look tired. I said I am tired..thats one of the biggest problems.
I feel a little guilty still to be going on about a little tiredness and a spot of weakness and joint pain.
I didnt take the internet advice at the appointment because I know some doctors sneer when youve looked things up on the internet but she was so lovely and said.. Nooo drop me in anything you think will be useful to me as I dont know much about Lupus or the drugs but love to learn and like a challenge. She hasnt anyone on her books on Plaquinel and she says there are no guidelines she can find to tell GPs what to do regarding it.
Well theres a little update as to how Im going on and thankyou all for caring enough to reply in the past.
Cheers
Sal x

 

[Clare.T]

Well done Sally. As to why you think you have no right to be as well as possible, well I am no psychologist!
Bravo to your GP as well. There's plenty of info available about Plaquenil.

GP's can prescribe it but when they prescribe a medicine they are responsible for the patient's clinical welfare so they are reluctant to take that responsibility if they aren't fully educated in its use and all the rest. My GP has only two patients with lupus in his practice of 6000 multi-ethnic patients.
So I can understand why she wants a consultant's go ahead. Is there any chance of you popping down to the London Lupus Centre ?

Here is one resource

http://www.lupus.org.uk/information/information_informationforpatients_Antimalarials.htm

Cheers
Clare

 

[Salopsally]

Thanks Clare,
Thats helpful. London would be difficult but not impossible.
I dont think Im serious enough though to go. Im doing ok. Id like to meet someone one day though that has Lupus to swap notes lol. You know whats silly.. sometimes I wonder.. do I have it really?
The GP is lovely so Im gonna rely on her at the moment to get me what I need.
She says I know more about it than her though.. so it is difficult isnt it.
Thanks for that
Sal x