[pippa85]

Hi,
I was told two years ago whilst traveling in Australia that I had S.L.E I was refered to a rheumatologist but couldn't afford to make the appointment, it was not covered by medicare and 80 bucks a visit was beyond my means. So my GP told me to see a doctor as soon as i got back to England, which I did. The healthcare system over here is pretty dismal which i hadnt noticed until now when i really need it. Ive been bounced around from rheumatologists to dermatologists and both agreed I should start hydrochloroquin, The nurse at my surgery was amazing and put me at total ease about starting the drug, she ran liver and kidney function tests and a full blood count to check i was able to start the drug. All came back fine and my nurse had to make me an appointment with a GP as she was unable to prescribe hydrochloroquin. So I was so excited about starting treament after suffering for so long and was feeling very postive only to be shot down by the GP who didnt think it necessary as i wasnt suffering a flare up and she couldnt see anything wrong with my skin. She said that the drug was too aggresive to start without long consideration and that its very damaging. So do I not have S.L.E? do I not need treament? im begining to feel like a total hypochondriac. I hate having blood tests as i usually pass out and im finding it so hard not to give up and just learn to put up with my symptoms.
Sorry that this is so long, its just been a long time that ive had to keep things bottled up. I dont want to bore or worry my family with all this.
Thank you

 

[Katharine]

Oh dear Pippa, hugs to you :hug:

You have every right to feel fed up and I hate to say this but you really really need to change GP!!!

If you have SLE (and it is not a diagnosis which is usually given lightly) then, whether flaring or not, you should be on plaquenil (hydroxycholroquine) as a baseline drug. It is disease modifying and reduces the frequency and severity of any future flares you may have. It takes around 3 to 6 months to work (and sometimes longer for full effect) which is why it is not just given during a flare. It is also the lightest and safest possible drug for you to be on and has many many beneficial effects and few or no side effects (unless you are one of the unlucky few who are intolerant).

It is potentially dangerous as an SLE sufferer to simply ignore the disease and hope it will go away. Unfortunately many GPs know nothing about auto-immune diseases but dont want to admit it. I'm trying to be polite about yours here or I'll get sensored.

What I don't quite get is why the rheumy you saw didn't write you out a prescription and a letter for your GP??

Here is a link that explains plaquenil a little
http://www.lupus.org.uk/article.php?i=164

If your symptoms are not reduced enough on plaquenil there are then plenty of other meds out there which can not only help you lead a more normal life but also save you from the "side effects" of the disease which are usually a whole lot worse than those of the drugs.

Although, your GP is obviously not top on this, you also really need to get back to seeing a rheumy (one who specialises in lupus) regularly. Rheumies are our primary carers with this disease as it is far too complex for most to understand.

I hope that helps a little. Feel free to ask as many questions as you like, we're here to help and also to give you a place to vent, shout, scream...

Katharine

 

[cath]

HI Pippa,

I'm sorry you are feeling unwell, but more importantly I an horrified and enraged at your GP.

For one, if a specialist prescribes a treatment it is not the GPs place to refuse or argue the decision.

Secondly, this GP is obviously poorly informed. Plaquenil (hydroxychloroquinine) is not dangerous - it is one of the safest lupus meds there are, with few side effects and low rates of complications. Also it is important to be on it to PREVENT complications and worsening of the disease. If she/he does not prescribe it, them the doctor is putting you at risk of getting worse, not to mention being neglectful in refusing to treat your illness as it is today.

If you can't get this GP to prescribe the medication, I'd change GP and write a letter of complaint to the practice manager of the surgery the GP works at.

Also the GP could use an update on lupus. Try this one:

http://www.lupusuk.org.uk/lupusagpguidetodiagnosis.asp

Don't give up. Keep on at getting the care you deserve.

By the way, why did the dermy or the rheumy not write you a prescription while you were there with them? Both could have and really should have. You should be able to phone either one and get a prescription from them too without an appointment, if they've done their doccumentation properly (ie written in your notes that they reccomended plaquenil be started)

Let us know how you get on.

X C X

 

[vlinder]

Hi Pippa,

I feel for you, going tru something similar right now.
Stick up for yourself and do what feels right.
Can you go to another GP?
Or at least call the GP again and tell her you need that medication.
Hugs... and please don't give up.

 

[greenheart]

hi pippa i know how you feel ive been there many times myself, i have recently joined this fab site and cant praise it enough for the support and info,i dont work as im ill more than im feeling well so im always here to offer my support to anyone needing it, im under going investigations at present but everything takes such a long time, DONT GIVE UP x anna

 

[pippa85]

Thank you

Thank you all so much for your support and advice,
The reason my rheumatologist didnt prescribe it there and then was my fault, im sure you'll all have experienced similar feelings. When she told me that she wanted to start treatment I was overwhelmed, Id spent so long being shoved around and became very emotional, I still had hope in the back of my mind that it would all go away without drugs. I didnt feel like i could take it all in and was not in the mood for blood tests that day, so she said I could take afew days to come to terms with it and do some research on the meds. She thought I would be more compfortable going through my local GP for the blood tests, she did write a note to my GP who read it whilst I was there, after reading it she started asking if my glands had been swollen and if i was tired! she was implying I had glandular fever. luckily i had glandular fever when i was 13 so i was well aware that wasnt the problem. I feel unable to question what im told by my doctors, at the end of the day shes the one with the degree, and im convinced they only want to do the best for me. It just seems comunnication between the different doctors is very poor.
Your messages have inspired me to carry on, baby steps, each day at a time, im not going to let this get me down, especially because so many of you manage to get through it, so can I!
much love xxx

 

[greenhaggis]

Hi Pippa,

I would not bother asking GP to start the Plaquenil, they should not be overriding the instructions of your specialist!

Go straight back and contact the Specialist as they were then ones that were going to start the medication for you and tell them that you have decided to start treatment now and your GP is putting barriers in the way. Ask for a precsription to be writen up and that you will collect it when they can tell you its ready (hope hospital if not to far away)! They will probably give you one that needs to be exchanged at the hosiptal pharmacy for the meds! All seems a lot of effort but it seems necessary do to the problems your having with your GP.

You will probably have to phone the Rhuematologists Secretary to get the message to them and then wait a few days while they get hold of your notes etc.

Once you get the the Plaquenil, remember to 'tell' the Rhuematologist to send a letter to GP advising them of the new medication at that it needs to be put on your list as a repeat prescription!

Hope things go better for you!

Lesley

 

[Clare.T]

Hello Pippa

"They are the one with a degree " Doctors are exactly like everybody else, good and bad, whatever their educational achievements. They do have a huge responsibility though because like parents & spiritual advisors they can be the most influential people in our lives, which they often hold in their hands.
Your need to have time to absorb the diagnosis and treatment proposals is very understandable and you really must not start blaming yourself or if you already have a tendency to do that then stop it because it will cripple you. It's not surprising that you had an emotional reaction after what you have been through. Upset is common post diagnosis, a mix of relief, regret and fear
People who blame themselves are most often very conscientous types with very little to blame themselves for.

Actually my rheumy sends prescription suggestions to my GP and I have the impression that is common practice. The only med the rheumy prescribes is the one I have to get from the hospital pharmacy. It's a question of who is bearing the cost in many places.
I have heard of a GP being unwilling to follow the consultant's recommendations but never ever with Plaquenil. It was a very expensive drug and judging from his comments about consultants, that particular GP's total attitude showed that he had heaven knows what problems of envy, resentment, disappointment, grudges, who cares, but he was a disgrace to the profession.

I think you are going to have to get a new GP, since she has showed herself abysmally ignorant and unhelpful. Her questions about glands and fatigue are daft, if she was meaning to throw doubt on the lupus diagnosis, because fatigue and swollen glands are common symptoms of lupus.
Viral infections especially Epstein Barr /mononucleosis/ glandular fever are strongly implicated as triggers for lupus. Only about 25% of people with lupus have skin problems at first- it is a common mistake to think all people with lupus have skin problems and a sure sign they don't know what they are talking about.

I suggest you have a word with the practice nurse who seemed a good sort? It is most unlikely that you are the only patient who has problems with this GP.
If there are other doctors in the practice it is usually simple enough to get an appointment with another. The nurse could be willing to suggest which one might be best.
A good GP is very important because they are your first port of call. They don't have to be very well informed about lupus but they have to be caring and willing to do their best, show respect and be willing to work in partnership. We often know more about lupus than GP's.

Meanwhile get back to the rheumatologist and explain what has happened. She might be willing to write a prescription for you
I suppose another appointment for follow up has already been made?
I think she might have given you more support and maybe a few leaflets to take away with you rather than leave you to find out on your own.
There is so much seriously wrong information and scare stuff out there.

Thank goodness you found us !:hehe:

Take heart and gather your strength - here's a strong dose of determination for you, and some comforting hugs :hug::hugbetter::there:

Let us know how you get on please - we'll help you all we can.
Bye for now
Clare

 

[My2Kitties2]

When I was dx the first thing I was given was Placquenil (hydrxychloroquine) also...even with all the naturals I do my doc asks that I take at least 1/day...if I am in a flare I can increase it...right now I am only taking that and vitamins to see what effect the naturals are doing before I continue...I don't feel any different with or without some of the products I was taking so this is my chance to make some changes...

 

[macfamily53]

Dear Pippa

You have already gotten a lot of wonderful advice from everyone in here so i just want to give you a big ((((((hugs)))))).I sure hope you do not give up on finding out what is going on with you(((hugs))).I just cannot belive that medicare over there does not pay for your appointments wow.I live in the united states and am on medicare and silly me thought it was the same everywhere medicare :lol:.Well good luck with everything and please let us know how you are coming along with the doctors.

Tammy

 

[lazylegs]

Hi Pippa,

Welcome to the site. You will find a lot of information that will help you to prepare for your next doctor's appointment.

Like you I never used to question the doctor's judgement either. In my quest for a diagnosis I found GP's know a little about a lot. When it came to Lupus they knew very little. That is why there are specialties such as rheumatology. You need to find a doctor that has some experience with Lupus and will be willing to refer you to rheumatologist. Clare's suggestion of going through the nurse is a great one. Maybe someone on the site could recommend someone. You may want to post in the "Find a Lupus Doctor" section.

I wish you luck in finding a doctor and getting the appropriate treatment.

Take care,
Lazylegs

 

[pippa85]

medicare

Thank you again everyone,
Just to let you know macfamily53,I was covered by Medicare whilst i was traveling in australia, so i was only covered for certain things because im British not aussie! It was a great service. But know im back in the uk, so sadly i have to put up with the NHS. I guess for nationals the medicare service is the same worldwide.

 

[Clare.T]

There is good and bad about every system and good and bad doctors everywhere. The UK must be the only country where a visitor can see a GP and get emergency treatment free of charge. If a visitor comes for medical treatment or needs specialist treatment in the course of their stay they will have to pay.
All treatment on the NHS is free at the point of delivery for UK residents, whether working or not. Certain categories get their medicines free of charge.
One big disadvantage is long waiting times to see specialists and very limited freedom to choose doctors.
One thing is the same in every country as far as I can see: if you can afford it you can get the best care with the least delay.
Some areas of the UK are very well served medically, but others are notoriously badly served.



Clare

 

[dudley]

Hi,

Have read over all the advice you have been given. It is right on. I am from USA. Our medical system is far from perfect. Could go into all the goory details that I have experienced but the novel I would have to write would ge my arthritis going.

One thing I did not see was the mention of steriods. Normally you are started on them (I hate them but they do work) and plaq is intruducted into your system. I don't know why your doc has not started you on these meds. If you can I would go to a different doc.

I have been been bounced around the system in the USA. It is not fun. And that was when I had good private insurance.

My best advice to you is to keep trying to get a better doc.

Best of luck

El;aine