[Salopsally]

Not really sure where to post this. Just thought Id run a few thoughts by you as Im feeling a bit frustrated by it all and you are usually all so good at putting things in perspective.

Diagnosed finally last year with Lupus and Fibromyalgia. Been suffering symptoms for many years and was originally diagnosed with RA.

The Rheumy that made the original diagnosis never ever mentioned Lupus in about 10 years of presenting with lots of symptoms that I now know are Lupus. In the end he realised I maybe didnt have RA so instead of looking for another diagnosis he just took me off all medication. Steroids. Methotrexate and Diclofenac etc. Within a day or two I was in a major flare up and couldnt move. I was in hospital at the time originally for physiotherapy and hydro therapy. He sent me home where I continued to be bed ridden and unable to even get out of bed for at least 3 weeks until my GP upped the steroids and I clawed my way back to some form of movement. For over a year I had the strength of a gnat and its been a long road.

Ive been fighting that flare for nearly 2 years now and have managed to get off Prednisilone and am doing ok.. ish.

After that experience my GP and me lost confidence in the Rheumy and she referred me to another one who nearly straight away diagnosed Lupus SLE and Fibro. This GP left the surgery on the day she recieved my diagnosis so I now see another lady doctor.

Ive been to him twice in 2 years as appointments are always about 8 months apart. He now thinks my weakness aches and pains etc are now just down to being unfit and overweight. (Probably mainly caused by the Pred.) Hes pleased Im off the steroids and has prescribed exercise. Thats all good of course.

I of course suffer symptoms in between and go to my GP who then has to contact him for advice for any treatment. Shes frustrated because he never replies and has told me that often patients with Lupus get a sort of hotline to get help when flares occur between appointments.

I asked if he was experienced Lupus doctor but she said no usually he treats arthritis more. Seems there are not that many doctors that treat Lupus especially. She seems to be losing confidence in him now and is thinking of referring me back to my original GP lady doctor who now specialises in Rheumatology not especially Lupus though. She was the GP that referred me to this Rheumy for the Lupus diagnosis.

Sorry.. this is sounding a bit complicated and rambling now. Perhaps some of you that know me a bit know what I mean though.

The bottom line is.... I think. My now GP and me think maybe I should be on some sort of treatment as she and the Rheumy have agreed my Lupus is not exactly stable. He is the boss.. but hes not mentioned me taking anything to help to keep things stable. My GP seems to think Im not drastically overweight and unfit enough for it be that thats causing my syptoms. I of course dont want to take medication I dont need but Im wondering if things would be better if I was on some mildish baseline drug.

Well.. phew!!! sorry.. If anyone manages to make sense out of that I will be surprised. I suppose Im just trying to make up my mind what to do now. It seems that some of you on here and I now know more about Lupus than the people that are in charge of my treatment.

If youve made it to here you need a medal lol.

Anyway.. I feel better for writing down my thoughts and thankyou in anticipation.
Cheers guys.
Luv Sal xx

 

[marymackay]

so many the same

Hi Salopsally

I'm so sorry that you have been pushed :sad:from pillar to post for so long.

D/X is so full of dips and highs, as we journey towards GP/specialists. As this is proceeding, the recurring or new symptoms come, and we have to add more specialists or GPs.

Our own sense of survival makes us aware that, as you said, some rheumies deal only with RH or similar, and the few I have seen did just that. I hope the 3 new specialists I see next month will do more, as it has been all my life with unexplained problems. Plaquenil for a year has helped slightly, but worse in other areas.

All the best for your D/X, and happy determination to succeed.

 

[Salopsally]

Thankyou Mary for your good wishes.
I hope you get some help too. If I was a Rheumatologist Im sure I would read this site and get some inside understanding of what its all about. Only we really know how frustrating it all is.
My best wishes to you.
Luv Sal x

 

[Joandublin]

Hi Sal

If you want my honest opinion I think you are being treated appallingly by your Rheumy.

First of all you have had two appointments in two years.... simply not good enough.

Secondly the only thing that he has shoved on you is pred Again - not good enough.

Thirdly, I know he mentioned Aza at one time and you were understandably nervous about it but if I remember correctly he didnt even follow this up with asking you if you had made up your mind. Is that correct?

Fourthly, am I correct in thinking he has never mentioned Plaquenil to you as a drug that can help bring your Lupus activity down?

Finally - he agrees your Lupus is not yet stable but still hasnt prescribed anything???

Sal, I just dont know what options are open to you to seek out someone else but I really think it should be a top priority. I know you left the last Rheumy because he was an idiot but you seem to have walked into idiot number two's office. Given the number of idiots out there, its hardly surprising so dont take it personally

Im glad your GP is not satisfied with this cretin either and a referral back to your first GP might just be the thing that triggers appropriate treatment for you. She will likely have knowledge of specialists in the field and can perhaps help you to find someone. Again I dont know the protocols for referral so thats something you should talk to her about.

The final option is perhaps to pay privately for a visit to St. Thomas and see if they will start treatment. Then your own Rheumy and GP can follow this through.

Im worried about you Sal because you seem to be rolling along almost accepting that this is as good as it gets and all the while your Lupus is grumbling along with you. It wont leave you Sal. It may get more manageable and you may even go into remission, but you have to be an active partner in the process.

You deserve better treatment Sal. Stiffen your spine, get that referral to your old GP and make a promise to yourself that you are going to tackle this thing head on. Think of yourself as a project. Make a plan, name your actions, carry them out, review them and change as appropriate and in so doing make yourself the centre of your world.

Lots of hugs Sal. Its not easy I know. You only have one life so make sure you do everything you can to make it as pleasurable and enjoyable as you can.

Love
Joan:rose:

 

[lazylegs]

Hi Salopsally,

You are on the doctor merry-go-round. It is not a wonder that you are frustrated. Don't give up. Keep letting your GP know when you are having problems.

Exercise and a good diet are good for us all. Any weight we can keep off the joints is helpful. However, it doesn't help all the different symptoms you might have.

Plaquenil would be the baseline drug of choice. It helps keep the symptoms under control and lessens the frequency of flares. It does have side effects but they are much less than Prednisone. The next time you see your GP you should discuss your options. The following site has the options available:

http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=treatments-and-drugs

Hope you feel better soon.

Take care,
Lazylegs

 

[Clare.T]

Hello Sal

If you don't try Plaquenil you will never know how much it could help you. There's no reason why you shouldn't have the best quality of life possible even if it takes more than the Plaquenil but you have to make the decision to go all out for the best for yourself. The serious side effects of long term Prednisone are very well known. Thousands take Plaquenil virtually all their lives with no ill effects whatsoever, only benefits.

You have had very poor quality treatment so far. We can't say if getting in touch with the first GP will help or not. I'd have thought your current GP could give her a call and ask her advice, see what she says and if she could assume your care and prescribe the Plaquenil and do the routine checks.
You might be able to access decent care outside your PCP whether private or NHS. But the essential first thing is to make up your mind that you aren't going to settle for substandard. You have lupus and you haven't been offered a basic medication for it. The physio and all that are wonderful therapies and will improve general health but they don't modify the disease process.

Go for it girl !
Clare

 

[Katharine]

Hi sally,

I read your post yesterday but was too tired to put more than three words together.

I have to say that I agree with Joan, lazylegs and Clare it is high time things changed. You have been posting a lot recently about really not feeling good and not knowing what to do and really it is time.

I can't really add more to what has been said. Just don't give up and push until you get results!

Katharine

 

[Salopsally]

Wow. Just got back here. Thankyou all so much for your time, concern and replies. Made me laugh Joan. Cretin is a good word lol.
I suppose that sort of confirms that Im not becoming a whinging self obsessed moaner for no reason.
Thanks for the encouragement to keep on pushing. I have been pushing with my GP and shes initiated getting some tests done. It amazes me that the last twice Ive seen the Rheumy after the appointment that was to tell me my diagnosis hes never done any more blood tests. I just thought that maybe that is normal as he knows I have it so whats the point in testing things again. When I have any worries my GP will arrange a test for whatever it is thats worrying me but like you all say surely the Rheumy should recommend something to try to get things a bit more under control.
The GP did say after thinking for a while. Yes... I will contact your old GP and see what she thinks about either moving me back to my area under her care or maybe referring me on somewhere else.
Ive mainly taken control of my healthcare in the last 13 years since having the first serious symptoms of what they thought was RA. Its been quite a struggle to keep pushing all the time and eventually I did get the new diagnosis. I had the joint pain, weakness, fatigue, mouth ulcers, a DVT, uncontrollable hives, at times while on Methotrexate a strange inability to move. My legs and feet swell massively some days and other days revert back to somewhere near normal. Never for long though. Ive had terrible water infections a couple of times where Im passing pure blood. I get aches and pains anywhere and everywhere sometimes. I even had a root canal removed at one time because I thought I maybe had mercury poisoning. If you look at that the symptoms can be very similar to Lupus so I suppose I wasnt that silly in thinking that that was maybe what I was suffering from. It wasnt and the test came back negative but at the time I just had to push and look into why I felt so awful.
I was sort of pleased finally to get the diagnosis. At least I now knew what it was.
But.... since then.. Nothing really. Like Joan said.. I rumble on with the Lupus and it rumbles on with me.
I do think well perhaps this is as good as it gets. How much better can you expect to feel or is it just a matter of time before I start to feel near normal again.
I think Ive forgotten what normal was now. I just start to think.. Yes!!! this is it .. Im getting there and then... I feel like a washed out dishcloth again and my joints start to flare.
Anyway thanks all for listening to me. You all are always good with support and encouragement and thats just what I needed.
Thanks again.
Luv Sal x

Hey.. My Personal Trainer rang today to arrange my assessment. Wooo Hooo His name is Delroy or something. He sounds a right hunk. Hes putting me through my paces on Wednesday to assess my fitness and I will get help at the gym for 12 weeks. My God. Its not going to be a pretty sight. Me in Lycra. Help!!!
Im hoping to start a slimming club too this week. Thats if I can pluck up the courage to go alone. Ive not got many fat friends to go with these days. They are all skinny minnies lol.

 

[Joandublin]

Hi again Sal

If it helps to stiffen your spine at all let me tell me what happens when I go to my rheumy appointment. Im under the public health system here in Ireland - similar to your NHS.

When things are going well I have an appointment every six months. When things are not going so well this can change to every two months approximately. Prior to every appointment I have to go and get a series of blood tests done (about two weeks beforehand). My Rheumy gives me the blood order sheet at the previous appointment and I just hold onto it until I need to use it. They always run a FBC, ESR, CRP, LFT. U/E, anti dsdna, C3 and C4. Most times they also run FT4 (Thyroid) and B12. Every so often they throw a few others in for good measure. They always test a urine sample at my appointment, take my blood pressure and weigh me (hate the last one - the humilitation! )

So you can see that I am being monitored very well and I am therefore happy that if something is starting to go wrong it will get picked up fairly quickly.

Its a far, far cry from the treatment you have received, thats for certain sure.

There is nothing wrong with taking control of your own healthcare Sal, but it has to be done in a partnership way. If you are the only one monitoring things and not getting any support or feedback the other way, it just doesnt work. You cannot be expected to understand the complexities of the immune system though I dare say you have more knowledge than some! I think also that if you have lost faith in a doctor, for good reason, it is very hard to regain this ground.

The best of luck in your treatment journey Sal. Let us know if we can help in any way.

Cheers
Joan:rose:

 

[Salopsally]

Thanks Joan,
Thats very helpful. I would have been very interested to know how my blood tests came out now as opposed to when I was first diagnosed. It seems basic stuff to just check that on 6 monthly visits.
They do my urine and weight and blood pressure but thats it for the last 2 appointments.
My joints are flaring quite badly tonight so I will have to get back on the case. Thanks for giving me some sort of benchmark to work from.
Sal x

 

[Douglas]

Howdy Sal,
Sorry you have suffered so much at the hands of physicians but be assured you are not alone. Unfortunately.
Hang in there. It can get better!
Douglas+