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Need some advice

268 Views 5 Replies 4 Participants Last post by  hardcandy
Hello everyone
I am wondering if anyone can help me please? My rheumy has said there is nothing he can do for me other than pred and that is really not a long term option - at the moment i am on 30mg every couple of weeks and it is just not a long term option. I have just lost my voice yet again and have yet another chest infection. Not to mention the fatigue and pains in legs wrists knuckles and hands. Anyway - apparently all my bloods are normal now and the ANA which was positive is now negative. So he thinks it is not lupus but something else to which he cant name. Because of my neutropenia he wont prescribe plaquenil or other meds mean while my hair is thinning and symptoms r getting worse. Pain in upper stomach and swelling of feet getting worse.....
Anyway have decided on a second opinion to St. Thomas, however, i am irish and i am aware that my health insurance wont pay. So am wondering - does anyone know what sort of costs i am looking at? Assuming of course that they will take me - my GP today said it could cost thousands...
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Hi Elaine

Im really sorry you are struggling so much to find out what is wrong. I cant answer your question about the costs of St. Thomas's but maybe an email to them can give you a rough idea of what a consultation or two along with blood tests, etc might cost? Either that or someone else might have more experience. Member Joirish has attended there and lives in the Cork area. Maybe you could PM her for some advice?

The other thing that I wanted to throw into the mix (if it hasnt already been investigated) is the possibility of Rheumatoid Arthritis. Did you ever have your Rheumatoid Factor tested? Have you had an anti ccp blood test? I know that a GP can order the RF test but Im not sure about the anti ccp which is a bit more specific for Rheumatoid Arthritis. Have you had xrays of your hands and feet to check for bone erosion?

The reason I mention it is because of your symptoms. RA does tend to affect the hands, wrists, fingers, hips and ankles over other joints (though they all can be affected). It comes with chronic fatigue and the vocal chords can be affected, causing hoarseness.

When the disease is active, symptoms can include fatigue, lack of appetite, low-grade fever, muscle and joint aches, and stiffness. Muscle and joint stiffness are usually most notable in the morning and after periods of inactivity. Arthritis is common during disease flares. Also during flares, joints frequently become red, swollen, painful, and tender. This occurs because the lining tissue of the joint (synovium) becomes inflamed, resulting in the production of excessive joint fluid (synovial fluid). The synovium also thickens with inflammation (synovitis).

In rheumatoid arthritis, multiple joints are usually inflamed in a symmetrical pattern (both sides of the body affected). The small joints of both the hands and wrists are often involved. Simple tasks of daily living, such as turning door knobs and opening jars can become difficult during flares. The small joints of the feet are also commonly involved. Occasionally, only one joint is inflamed. When only one joint is involved, the arthritis can mimic the joint inflammation caused by other forms of arthritis, such as gout or joint infection. Chronic inflammation can cause damage to body tissues, cartilage and bone. This leads to a loss of cartilage and erosion and weakness of the bones as well as the muscles, resulting in joint deformity, destruction, and loss of function. Rarely, rheumatoid arthritis can even affect the joint that is responsible for the tightening of our vocal cords to change the tone of our voice, the cricoarytenoid joint. When this joint is inflamed, it can cause hoarseness of voice.
from this link:

A positive ANA is also found in about 50% of patients with RA and, by the way, the ANA only has to be positive ONCE to contribute towards a diagnosis. The fact that it is negative now is not something that your Rheumy should be relying on. The doses of pred you have been on could well affect the results anyway.

Luv n stuff
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Thanks you

Hi Joan
Thank you so much for your advice and support as always. I have been tested for RA and it is negative. Although at this stage i am starting to doubt everything. My GP was away today so saw a locum who refused to link the hoarse voice with anything in the past and basically said accept what the rheumy says and get on with it. She also refused to listen regarding my concerns about the steroids and was positively ignorant when i asked for a referral to St. Thomas's in London and stated that i couldnt afford it! I left the surgery close to tears and broke down completely when i bumped into a friend while filling the prescription. ~Just feel so deflated - have had no voice at all since thursday, as we speak my left hand is very swollen and i feel like crap - yet i am trying to be positive and happy - it is just so difficult - even the pink hair had to go as it is thinning at a rapid rate.

Anyway - enough about me - i read you are also having trouble - well when you learn how to shift the sumo wrestler will you tell me. I too am breathless for no reason at all even talking so i know exactly how you are feeling! I have to deliver a conference lecture in a few weeks and i am absolutely dreading it in case my voice goes or i cant project it!

Oh the joys of it all! The doc today refused to look at my hands or feet as she said "I am only here because of voice and that is all she is treating". Not only that but she said i probably is just a virus and was i aware that it is now october and therefore the season for it..... i pointed out that this is the 3rd episode in 4 weeks and she said it is only the first she has seen eh hello!!! She was a Locum!!!!! Arrrgh - i neglected to mention to her that i am a microbiologist and therefore am well aware of the growth and survival conditions for micro-organisms and viruses - can you see now why i left close to tears - felt totally degraded and humiliated!!!!!

Anyway - sorry for venting but thank you for listening!
x e
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Hi again Elaine

Im really sorry to hear about your terrible experience today. Actually Im raging with anger to be honest :mad: No wonder you broke down in tears :hugbetter:

Even as I was writing the stuff about the RA I was thinking 'but what about her anti dsdna antibodies? How can they be explained?' It was a shot in the dark but these autoimmune disorders can overlap so having one doesnt exclude having another anyway.

When you have recovered from today's ordeal with that idiot Locum, can you go back to your own GP and ask for a referral to another hospital? Your GP seems to be supportive of you from what you wrote before. Sometimes the way one approaches these appointments can make all the difference.

Say for example you rang him beforehand and said you wanted a lengthy appointment for which you were prepared to pay appropriately - even if this means a double appointment. Say that what you want out of the appointment is a plan of action about options, possibilities, referrals, where to next, etc. Just impress upon him that you are determined to get yourself well. Let him know that you are prepared for the long haul and will not stop until you find out what is wrong and what is the best treatment and you really want him to work with you along your health journey. Make your health a number one project and treat it like that.

You dont want to be ill but the fact is that you are. This is NOT in your head (and if he thinks it is get a referral to a Psychiatrist so you can get the all clear from that avenue as well;)). Nothing as good as having a 'certificate' of saneness when the old boys network tries to convince you that you're mad.;)

Sounds like you need to lick your wounds and take a very deep breath. Today sounds devastating but do not let idiots throw you off course. You sound very sane to me but you do sound sick. Stiffen your spine Elaine and we will help all we can to give you the support you need to get to the bottom of this.

Much love and strength
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Hi Elaine,

I am very sorry, angry and frustrated to hear of your experience. When suffering, so one deserves to be passed over like you were, and I think every member of this board can relate to a similar experience. As little of a consolance as it may be, please take comfort in knowing that! Lupus is a very fickle disease.. and sometimes doctors, no matter how much education they have .. do not know everything. I have learned more from posters on this board and internet research than I have from my doc.

I will keep you in my prayers and hope you are feeling better much soon!


I am also sorry that you're going through all of this, Elaine! Two thoughts I have: Hashimoto's thyroiditis and GERD.

Both Hashimoto's and gastric reflux can cause voice problems. Hashimoto's likes to run with other autoimmune diseases, especially the connective tissue diseases.

Your voice could also be bad from steroids, right?

Other ctd, like scleroderma, could cause reflux and GI issues, so you could be working with MCTD.

I apologize if this is already info of yours that is on the boards and that I've missed.

I've recently been twice undiagnosed after a move to Chicago, so I feel your pain, although I'm not in the physical pain and distress you seem to be in, thanks to Plaquenil.

Hair loss (sorry if you already are familiar with thyroid disease) can also be from Hashimoto's. Finally, have you ever had your hormones checked for Polycystic Ovarian Syndrome (PCOS), or other hormonal imbalances? I imagine steroids can mess with your hormones, right? I imagine they would make PCOS worse.

My hair loss issues have been much improved with PCOS medication.

Are you able to see an Irish endocrinologist with your insurance?

Before I was diagnosed with CTD, I was diagnosed with PCOS and Hashimoto's. Many of my symptoms improved with treatment for PCOS. I didn't have any symptoms from the thyroid, since mine is still in the normal range, so the endocrinologist had to take a look at which symptoms were left. He's the one who discovered the connective tissue disease. So, the more thoroughly you check out other possibilities for what could be making you sick, the more information you have to present to your rheumatologists.

Even with tests showing my thyroid is normal and medication for depression, my new rheumatologists suggested that they couldn't make a dx because these other things could be causing my symptoms. Everyone always says that a positive ANA can come from autoimmune thyroid disease, even though my endo said that wasn't why mine was so high. Sometimes, no matter what you do, doctors are going to point the finger at your head. Or your thyroid. I do my best to stay on top of those other conditions to clear the water as best I can.

For me, having as much info as is possible makes me feel more in control. It might put your mind at ease to rule everything else out. Additionally, chances are good that you have something else going on too, since having one autoimmune disease makes it much more likely that you have another, or two more, or...

Any other autoimmune conditions in your family history?

Finally, in the meantime, you might want to explore acupuncture, if you haven't already. Acupuncture worked as well as plaquenil for me, as far as the pain in my hands and feet goes. If you do have PCOS or high levels of androgens (maybe from steroids), aldactone has worked miracles for hair loss, acne, and facial and body hair. Some natural alternatives to aldactone include mint teas, and you can find out more by researching on the PCOS boards. Aldactone is a diuretic, so it might relieve some of your swelling, too, but you'd have to check with a doctor to see if it's a good idea systemically.

O, and - is your heart okay?

To be clear, I'm not suggesting these other conditions because you might not have lupus or ctd - I just wonder whether any of these can be adding to your suffering. If so, you might be able to take meds to stabilize those, which could put you in a better position to be diagnosed and treated for lupus.
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