[So Worn Out]

Hi

I have only just discovered this website. Looking through the information on here about all the symptoms, I think that I could possibly have had lupus for about 14 years. I have recently changed my Doctor and he seems to be a bit more interested in putting the pieces of all my problems together and has said that he thinks it could be lupus. He has given me a 5 day course of prednisolone to see if this helps. (4 x 5 mg (or is it mcg) per day.

If it is lupus, would I expect to see an improvement in such a short space of time?
Thanks.

 

[cath]

Hi,

Welcome to the forum.

I'm sorry you have been unwell for so long.

What are your symptoms?
The usual person to see to get a diagnosis of lupus and other related conditions is a rheumatologist. If your doctor suspects a connective tissue disorder, you should be refered to a rheumatologist. There are also a number of tests which can be done to help in the diagnostic proceedure. The first would be an ANA. About 95-98% of people with lupus are possitive for this antibody, although also about 5% of healthy people, so it is not a definitive test.

Prednisolone is a drug often used to manage lupus. It works quickly (within 2 days usually), so 5 days at 20mg should be enough to notice some effect from it. It isn't a diagnosis though if it helps you. Pred will help all inflamatory conditions, so it is a very broad pick me up. It really should help if there is an organic cause to your problems, whatever that problem is. If it doesn't do anything, then it may be that your problem is more in the line of fibromyalgia or a pain syndrome - where the cause of the problem is the brain's reception and response to simuli.

The most important thing is that referal to the rheumatologist..

X C X

 

[So Worn Out]

Hi & thanks for the reply.

I have Raynauds
I have Osteoarthritis and Rheumatoid arthritis
I have dizzy spells & sometimes tinnitus
I have lots of pins & needles affecting mainly my hands and feet
I have extreme tiredness and cannot get enough sleep, even 10-12 hours per night is not enough.
I have muscle weakness and "tender points"
I take anti-depressants
I have angina
I have an underactive thyroid

Gosh, this sounds worse now I see it all written down.

My new Doctor told me that I have had numerous ANA positive tests over the years. I have seen a rheumatologist in the past who said that it was not rheumatoid arthritis, but then 3 years later, my Doctor said that it was rheumatoid arthritis and he didn't need to send me to a rheumatologist to confirm his diagnosis. This is so confusing.

Thanks
x

 

[cath]

HI,

In theory, your doctor is right that anyone MAY give a diagnosis if they are a doctor, but of course the more skilled and experienced the better chance that the diagnosis is correct, and that treatment will be appropriate.

I'd really push for the rheumy appointment. From what you write , your symptoms are fairly vague and could be from a number of different conditions including RA and lupus. Fibromyalgia is also something they should test for (you say you have tender points..). Do you know if your hypothyroidism is autoimmune or not?

Really, especially in cases that aren't immediately obvious, the more specialised and experienced your doctor the better your chances of getting treatment that helps.

X C X

 

[greenhaggis]

Hi and welcome!

Sorry to hear about all your problems! When I was diagnosed just before Christmas with Lupus I too was Prednisolone just to give me an initial boost.
For long the term treatment I was given Plaquenil - do you take this already or have you just started on it and if not prescribed I would ask your GP why not!!!

I hope you get to the bottom of this as it seems like you have enough medical conditions to deal with already. I would also insist on a referal back to a Rhuemotologist so you can have fresh investigations, I don't think there are many GP's if any that are autoimmune experts.

Take care,

Lesley

 

[LolaLola]

You really need a good Rhematologist who is experienced in Lupus. (not all are).
You do need to rule Fibromyalgia either in or out. It can exist alongside Lupus and treatment to improve the quality of your sleep can help it a lot.

I am sorry you have been ill for so long, the same thing happened to me.
x Lola

 

[Clare.T]

Welcome to the forum !

I agree that you need to take charge of your health and insist on a referral to a rheumatologist. There are very few GP's competent to diagnose connective tissue diseases accurately and even fewer who have experience treating them effectively. It is very important to treat RA effectively from the get go to avoid the worst crippling complications. To claim to have diagnosed RA is bad enough, not to treat it is simple negligence in my opinion

I suggest getting previous blood test results. If the ANA is positive further tests should be done. This GP can get an ANA done again although it doesn't have to be positive more than once in a health history. He can also do the test for rheumatoid factor as well of course a complete blood count which might show up things like white blood cell count and anemia that could be relevant, as well as a urine test. What about SED rate ?
It would be a good idea to be tested for B12 deficiency and to make sure the thyroid is well controlled. There are several treatment options for fibromyalgia which seems very likely from what you say.

The Prednisone reduces inflammation from any cause so taking it for a few days doesn't prove anything really except that there is an inflammatory process going on, not what exactly it is. It might influence some blood test results by the way straight afterwards.

You probably will feel better but that doesn't mean the disease has been treated, just dampened down for a while. Prednisone is never taken for any length of time if it can be avoided because of its harmful side effects.

Since this GP seems to be well disposed & helpful insist on a rheumatology referral. We'll help you all we can to better health and enjoyment of life, so just ask for any further advice.


Bye for now
Clare

 

[So Worn Out]

Hi and thank you all for your replies.

I guess I have never been one to "stand my ground" with the Doctor - I am always a bit timid when I go, so invariably I come out not knowing much more than I did when I went in. I don't ask enough questions and I just accept anything the Doctor tells me.

I aree that I need to take some control here so I am now going to write down a list of all my symptoms (whether they seem connected or not) and I will take this to the Doctor when I go on Friday. I will take a deep breath and have a proper discussion with him. I simply cannot go on any longer feeling like this and not knowing what is causing it.

Many thanks for all your support - it is lovely to know there are people who understand.

Take care
x

 

[halfpintfl]

Hi So Worn Out, and a warm welcome to this great site.
When I read your second post, where you listed your symptoms, it sounded a lot like you have Fibromyalagia.
Remember, that is just my two-cents worth. Either way
you would still have to see and be dx by the same dr, a
Rheumatologist. If you have seen two, and you have two different opinions,you might want to see a third. It is your body and you want to be sure. Either way, dx is usually a long process. Oh, that list of symptoms, make a copy, and hand it to him, and tell him it is for him to put into your file. Let us know how it goes.:wink2: ​

 

[wolfieUK]

Hi and thank you all for your replies.

I guess I have never been one to "stand my ground" with the Doctor - I am always a bit timid when I go, so invariably I come out not knowing much more than I did when I went in. I don't ask enough questions and I just accept anything the Doctor tells me.

I aree that I need to take some control here so I am now going to write down a list of all my symptoms (whether they seem connected or not) and I will take this to the Doctor when I go on Friday. I will take a deep breath and have a proper discussion with him. I simply cannot go on any longer feeling like this and not knowing what is causing it.

Many thanks for all your support - it is lovely to know there are people who understand.

Take care
x

Hi there
Just to let you know you've definately come to the right place
I too was like you & just accepted what the DR's said & have waited around 12 years before trying to get to the bottom of it all!
I sent a letter to my GP practice to get copies of my blood test results for those past years (it cost me £4 but well worth it, some surgeries don't charge!)It gave me the boost to tackle my GP who has been the same one, but he seem to view me in a different light & has been brilliant in referring me to a Rheumy,then I got a call from him to say he had referred me to a Haemy as the Rheumy hadn't come up with anything conclusive. he said he had telephoned the Haemy to explain about me & what he should do? & the Haemy just said to send me to them & thats where I'm to now~I might walkaway with no real answer at the end of all this but at least now I feel like its least its being investigated.
I now have a folder with all my notesrevious blood results, family history, previous appointments, illnesses, meds etc~which not only helps when your memory lapses but I think it shows that you mean business!
Good luck & you'll get lots of support on here they are a great bunch
Take Care
Wolfie xx