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Discussion Starter · #1 ·
Hi as a newbe, I have just been told that I have LUPUS, although I have had CFS for over 15 years. I know it has got worse than it was, as it is now affecting my lungs. I have been waiting for nearly 2 months now for the results and still waiting. All I know is it does not matter what they call it, It still hurts very much.
By the way, I am one of the few (MALE):lol:
Walt
 

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Hello Walt and welcome :)

I'm thinking that you have probably had lupus for quite a while and that it was incorrectly diagnosed as CFS. CFS is a diagnosis of exclusion and it cannot co-exist with SLE.

The good news with your new diagnosis is that the treatment will be totally different and, as it will be treating the right thing, should make a big difference to quality of life and symptoms.

Has the doctor already started you on any medication or talked to you about it? Have you seen a rheumy?

If you have any questions, feel free to ask. The members here are great and more than willing to help out when they can.

Katharine
 

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Hi Walt,

Welcome

I hope you can start on a treatment soon. Remember it does take some time for the meds to kick in. Being patient is hard to do when we are hurting so bad.

You are so right lupus hurts very much.

Have a good look around the site.
Oh my brother has sle too.

Take care,
Lyn
 

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Welcome to the forum Walt :)

I am sorry about your diagnosis and your pain. I often wonder how many people have been misdiagnosed with CFS when they really have lupus or other undiagnosed symptoms. The trouble is that a diagnosis tends to stick and no further investigation is done.

I suppose you have had a consultation with a rheumatologist who gave a preliminary diagnosis & took blood for thorough tests, and you are now waiting for the follow up appointment to confirm the diagnosis and start on medicine for the lupus? Most follow ups are within two months and the follow up appointment is usually made either at the time of the foirst or you should hear very soon after. So if you were expecting to hear about a follow up and haven't have heard anything yet about a follow up you need to take action now.

Most of the medicines for lupus take several weeks to kick in, or even a few months. Surely you have been prescribed one of the many NSAID's, (non steroidal anti inflammatories) for joint pains? If so and it isn't helping your GP can prescribe other soprts of painkillers. What works for one person doesn't always suit another.

Another fast pain reliever is the drug Prednisone which quickly reduces inflammation. It isn't a good idea to take it long term because of side effects but it can tide over or be used to quickly calm a flare up. It might not be used before blood tests because it can alter the results. This is assuming your pains are joint pains caused by lupus, but several different sorts of pain can be found along with lupus ones, such as from fibromyalgia which is fairly common along with lupus and needs different treatment.

Your GP should be able and willing to help you with all this - prescribing NSAIDs and Prednisone, although they prefer to have the consultant's go ahead for the Pred, and he should also be willing to contact the consultant to ask what on earth is going on. Unfortunately there are often secretarial slip ups and with the current performance of the Post Office, post goes astray. Your GP might have already heard from the consultant though.

By the way, get copies of your test results when they are available

We can't assume that all pains or new symptoms are due directly to lupus and the GP is the first port of call. There's also A&E. Please let us know how you get on - nobody should be left with untreated pain these days even though it might not be possible to completely eliminate it, it certainly can be considerably reduced and it is physically bad for the body to suffer pain, not to mention its effect on quality of life.

Bye for now and very good luck to you. Do you have somebody at home to help you out ?

Hugs
Clare
 

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Hi Walt and welcome to the site. It is a great place to find info and support. 2 months is a long time to wait. Are you on any treatment in the meantime?
How much longer do you have to wait?

Deb
 

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Discussion Starter · #6 ·
Hi I have got a phone call today and have an apiontment to see the Rume tomorrow, and hopefully get some meds in to me a get the pain down a bit. Even when I had these problems a few years ago, I could use to do a bit of work around the house and then feel tired, but now it is all the time.
Walt
 

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That's great that you have a quick appointment. If you've got the time, try and write down a quick list of questions... I always forget something when faced with the doc.

You'll have to be patient with meds as they do take quite a while to kick in (except prednisolone) but it's great to finally know what's wrong and be on the right track.

Best of luck for tomorrow :)

Katharine
 

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Discussion Starter · #9 ·
Hi, had the appointment yesterday, and are going to put me Pregnisalone (think thats how you spell it). I start with 20mgs for 7 days and drop it by 2.5 each week until I get down to 5mgs. Then I have another blood test and go and see him again to see how I am doing.
After seeing him yesterday, it all made sence but after today I seem to feel as if nothing is going to happen. Not sure if anyone esle had feelings like that? I want to get better but after having my illness for so long, I can't see the light at the end of tunnel.
Walt:sad:
 

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Hi Walt, it sounds as if your rheumy appt went well. Prednisolone can work quite quickly and we can feel much better, although it is then tempting to overdo it!!! I hope this happens in your case, as it will help you to see that light!!!! With the correct meds, things do improve.

Let us know how you get on.

Deb
 

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Howdy Walt,
Welcome to the wonderful wacky world of Lupus. It sounds as though you have, as have I, gone through previous diagnoses until one interested MD, took a history and did so many blood tests that I thought I would bleed to death.
Yes, we (men) make up about 10% of Lupus sufferers. If nothing else it is comforting to know what has been wrong with us (and in my case, mystified several medical doctors).
For all its miseries, Lupus is never ever dull.
Doulgas+
 

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Discussion Starter · #12 ·
Hi, having been to the specielist, he said that I would feel really good in 2 days, it is now 5 days and I have not had any improvement. Do you think that I should phone him telling him this or leave it a week or so?
Walt:sad:
 

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Hi Walt,

Sorry youve not had a result from the Pred!

Yes, I would give then a call perhaps in a few days...no point waiting and perhaps the meds need adjusted a little more!
 

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Hi Walt, sorry that you are still feeling so lousy. The Pred should have had some benefits by now :( What problems are you still having that it hasn't relieved? It would be best to ring the consultant and tell them what's going on I think, no need to suffer unnecessarily!

love
Lily
 
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