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Discussion Starter · #1 ·
My story may be a little long, but I'll make it as short as possible.

For 3 years I have had severe leg pain. No one could pinpoint why, I had a spinal cord stimulater put in and no help...Terrible Operation, I don't recommend it to anyone!

I have had so many injections...I can't count them all..no help. A month ago my pain doctor sent me to have a nerve conduction study again. The first they did about 2 years ago showed abnormal but they could not pinpoint the problem.

This one showed I had chronic righ common peroneal neuropathy and evidence of chronic denervation/renervation in the right gluteus medius. The neuro ordered blood tests.

The first blood test came back positive for sojren's.
SSb was 172..normal was 1 -99

I was sent to a rhueme who said I had no symptons of sjogren's and ordered more blood work..
Second blood tests revelead negative for SSB..
but had these abmormal results:
WBC - High
RBC - High
ABsolute Eos - Low
ANA - Positive
Ribonucleic Protein AB, IgG - High

The rhueme said he wanted to start me on either plaqenil or predizone. That both Lupus tests were positive. My husband didn't agree, and the rhueme ordered more blood work.

I went to see my pain doctor who agreed with my husband, saying we should not start me on such strong meds until we know exactly what I have.

I have read it can take years before you are finally diganoised. Wouldn't it be better to take the meds to prevent anymore damage while they are trying to figure all this out. My husband and doctor both said that I am grasping at straws, maybe I am, I want to be fixed!

I hurt, I"m so tired I don't feel like doing anything. I never eat, never hungry, and I can sleep even though I feel like I could.

I honestly don't know how much longer I can work like this. I just want something, anything, to make me feel better.

I am currently on pain meds, sleeping pills, and at my last visit because I got upset, my pain doctor just put me on depression meds..Heck yeah I was upset. I want something done...anything! I think I've finally found someone to help and now I am having the 2 people I trust the most tell me not to do it.

Help I'm so confused!
 

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Do you know how high the ANA titre was? The higher the titre, the more likely something autoimmune is contributing to your ill health. It seems like you have enough symptoms and positive bloodwork to warrant a diagnosis of UCTD or possibly MCTD (Undifferentiated or Mixed Connective Tissue Disorder) if not lupus. The usual first line medication is Plaquenil for lupus, or either of those two other disorders.

I would tend to agree with the rheumy doctor, and would want to start on Plaquenil given your symptoms and bloods and what the doctor recommended. He is the expert and the best one to diagnose it after all!

Plaquenil is a very safe medication to take, about the only serious side effect is a very rare sort of damage to the retina which can be avoided just by going to the eye doctor for a checkup every year. Prednisone is ideally just to be used for short term results or severe flares. If you did a trial of prednisone and your symptoms improved dramatically then that would be further evidence something inflammatory is going on.

Good luck and I hope you go back to the rheumy doctor since you are confused - he/she should be able to discuss things with you and also reassure you that this is the probably the best thing to do. It's worth a shot trying to address a possible root cause of the pain - which is something Plaquenil would do. Very safely too!
 

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Hello there and welcome :)

I think it is quite normal, that "I want to be fixed feeling"... we have all felt that way oh so many times!

I would just like to second Maia here that if the rheumy feels a trial of plaquenil (and possibly a short course of pred) should be tried then I'd go for it.

Plaquenil is very very safe indeed and I would totally disagree with the pain doctor about it being a "strong" med. It is absolutely invaluable and has huge benefits but is not "strong" in that way. It does, however take a long time to start working and sometimes a short course of prednisolone to help you over a bad patch can be worth trying as well. I certainly wouldn't want to be choosing prednisolone "instead" of plaquenil as they are not at all in the same league. Long term prednisolone use is to be avoided if possible and most rheumies will try to do exactly that.

Sometimes when reading about autoimmune diseases at first we get the impression that med options are limited but there are, in fact, a lot of different meds that can help. It is a question of getting the right mix for each individual. For some people plaquenil will be enough, for others they'll need more - including sometimes prednisolone if it can't be avoided (I'm one of those that has it in my "mix").

If your hubby is going to butt in and stop you asking the questions you want to ask at the rheumy's then I'd go along alone the next time. You need to feel that you can ask questions and have your mind put at rest. The relationship you have with your rheumy is so important.

It is very difficult for anyone not suffering from this type of disease to even begin to comprehend it. Unless you have suffered from it yourself, you simply can't imagine what it is like. Family members can take a long time to understand and even then I have found that only my hubby has actually even been told the half of it. For most other people I just brush it off with a joke and if I'm limping one day tell them I fell off my horse again (nope, I don't ride any more - don't even have a horse any more - but if you say it with a smile it stops questions).

I hope you can get some relief very soon,
hugs :hug:

Katharine
 

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Hi there Barbstar

Welcome to the Forum. Im sorry you seem to be suffering so much and getting conflicting advice. To be blunt I believe that you need to listen to the advice of your Rheumatologist who is, after all, the expert in this field. While your husband and GP might feel they have your best interests at heart, they are not experienced enough to understand the implications of your symptoms and blood results.

It seems like your Rheumy is interpreting your blood results to mean that you very likely have an autoimmune problem and to be honest, based on my limited experience, I dont blame him. Your bloods indicate a possible overlap of autoimmune diseases. The anti RNP in particular is quite definitive in this respect. Also your low EOS count could be indicitive of acute inflammation (there are other probable causes as well though)

I do hope you can find the strength to make your own decisions regarding your health. You are right in saying that it would be better to start on treatment now rather than wait until things get out of control. Plaquenil is a very safe drug in comparison to many over the counter medications and is tolerated very well by the vast majority of users. Prednisone is recommended to be used sparingly but it is excellent for quickly reducing inflammation and has been a life saver for many of us with autoimmune conditions. I have been on low dose prednisone daily for just over three years as well as taking Plaquenil and a non steroid anti inflammatory (NSAID). I have Lupus along with a few other conditions.

Go with your gut on this one. Listen to your body and your specialist.

Take good care and if we can help any more please just ask

Joan:rose:
 

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Barb, I don't know why your husband would disagree to your treatment unless he is in denial and doesn't want to admit you are ill.

If it were me, I would call the rheumy ASAP and start on the plaquenil and pred as he wanted you to do. Plaquenil is a rather mild medication and can make a huge difference in the future of your disease. It might help hubby if he did a little research on the internet. Starting treatment would definitely help your state of mind and this is really about you.

I'm sorry to hear about your pain. I saw a spine surgeon who advised me to get a SCS (he said he'd have to put a rod from the bottom to the top which is impossible). I looked into it and came accross many stories like yours and so I continue with pain meds, too.

Please let us know what you decide to do. I hope you decide on the treatment;)
 

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Don't know if this would help-but thoughts on the leg pain

I have much less in the way of blood tests telling me what is wrong, and I have already begun plaquenil. Plaquenil does have side affects like any drug, but I would agree with everyone else, that very few people experience them, and you can always stop the medication on a dime if you don't tolerate it (that's what my rheumatologist told me.)

So, based on your note, sound like you had a similar test that I had, where they test electrical signals in your leg, and noticed some abnormalities. I read that Sjogren's can have neurological symptoms. I was wondering if you have ever had an MRI of your brain, or spinal cord? And, have you had a test called Visual Evoked Potentials, which is a test that often allows them to pinpoint areas where the nerves may not be conducting properly. The test that I had that you also had, left my neurologist with a lot of unanswered questions, and I am having the Visual evoked potentials test and evoked potentials test in a few weeks, to try to understand why my right leg occasional has problems. My issue may or may not be neurological (it may be that I have a clot somewhere reaking havoc). But, either way I should get some answers soon.

My husband is having a difficult time with all this uncertainty as well, but has generally deferred to my judgment. I would say that starting plaquenil sooner than later, may save from the continual hurt, because it takes 3 months to take affect. I understand the being upset. I have had my crying outbursts myself, feeling very powerless over how my health is going. I think in the world of autoimmunity, treating the symptoms with standard first line drugs to limit the suffering is not unheard of. Pain doctors and neurologists are generally not as knowledgeable about autoimmune disease, and I would say the rheumatologist's opinion is probably safer to go with than other doctors who only occasionally deal with the world of autoimmune conditions.

I wish you best of luck. I work with neurologists and MS patients, and I know how most neurologists respond to autoimmune conditions. Unless they have absolutes, they tend to not want treatment to begin. Rheumatology-totally different approach.
 

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Discussion Starter · #7 ·
Wow!

I couldn't believe the responses I received. There are so many caring people in this world. Thank you all!

I too tend to agree with you that I should take this medicine. My husband loves me very much and has always been a huge support. He even rubs my leg every night when I am in pain. I know he's worried, and as one of you said..he may be having a harder time with the thought of me being ill than I am. I have known all along that something wasn't right, where he has just thought I had leg problems.

The next time I go to the rhueme he'll have the results of my 3rd round of blood work. If that also shows positive, then I'm joining you all in the med world!

Again, thank you so much. I was doubting myself and hearing from you has helped me more than you know.

I hope you all have a wonderful holiday!

Barb.
 
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