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Hello From Euless/ Ft Worth Texas

249 Views 5 Replies 3 Participants Last post by  SophieH
Hello my name is Sophie and I want to introduce myself. I posted a note earlier and maybe it had to much info in it. I apologize I am frustrated. It has been a long journey. I would like to know if anyone else has been on methotrexate and if it has helped or if the side effects were worth it. I have a Dr who refuses to give me a diagnosis of Lupus but will use the term in the office with me. I am also having new onset kidney problems. Most of the time I feel as if I am the only one I know who is going through what I have gone through. Although I would not wish these problems on anyone else it was comforting to read some of the posts on here and know that there are other people who really do understand what I am experiencing.

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Hi Sophie and welcome :welcome:

I just had a look at your original post and I think it contains helpful info and not too much of it :) so I've decided to copy it here if that's ok :)

Hello my name is Sophie and I have been reading some of the post on this site with tears in my eyes just to know I am not the only one going through what I have been experiencing the last 13 years.
Since I was pregnant with my last child I have had joint pain and swelling, hair loss, severe migraines. Progressing to dry mouth and eyes, Reynauds with sores on my hands. Blood clots, a seizure, meningitis, status migrainus, anemia requiring IV iron more than once, sun sensitivity, lacy rash, insomnia, costochondritis and probably more I have left out. I have had a positive Ro-ss,ANA= 380, positive antiphospholipid antibody, but neg anticardiolipin.Also at other times these tests have come back neg. I have read that this is possible for you to have Lupus and these tests to come back pos and neg at various times. Also that 20 % of all Lupus pt remain sero negative for the ANA. And still they give me a diagnosis of unspecified connective tissue disorder with Sjogrens Syndrome. Now I have been told I have Renal tubular acidosis and must see a nephrologist asap.
Last month my Rheumatologist was not happy with my progress on 200mg of Plaquenil and at one point 20mg predisone, now down to 8mg. He wants to start methotrexate. I have said no to the methotrexate.
I am allergic to aspirin and NSAIDS so he is limited to what drugs he can use.
I am also on disability for severe migraines and have had to quit my job which I miss very much and I am too young to be staying home.
My hematologist has insisted for 3-4 yrs that I have Lupus but since it is not his specialty he cant make the call. My neurologist has maintained that my migraines have nothing to do with the USCTD ( or Lupus). Seeing some of the messages today though makes me realize others are having the same problem.
Supposedly I go to one of the top Dr's in Dallas. I am not sure what to do or if methotrexate is the way to go...any advice?
I'll attempt to answer some of your queries and hopefully others will come along with their input too.

First let me say that I am sorry for all you have been and are still going through :hugbetter: but I am so glad you found us!

You certainly have a lot of symptoms that would land you a diagnosis of SLE, and even some blood results that would be enough to get you diagnosed. In the end the doc makes the call based on what he sees and taking those blood results into consideration. It's quite possible he does think you have SLE but does not want to put it down as that ófficially' - reason being it can affect all sorts of things like insurance etc. A diagnosis of UCTD and Sjogrens is maybe a compromise by him and is neither here nor there really as far as treatment goes. Treatment is tailored to the individual and their particular problems, we all have slightly different blood results and vastly different symptoms. The meds for all these similar diseases are very much the same depending on what your case requires to help bring the disease under control.

Hopefully he has your best interests at heart and is trying to give you a better quality of life, regardless of what he calls it. That's more important than anything really, some here don't even get recognition for their suffering and others are sadly undertreated. With a bit of knowledge you will be able to judge whether that's the case or not. Hopefully we can assist you in gaining that knowledge.

The Ro-SSA antibody you have is associated with both SLE and Sjogrens. It's possible you have both conditions really looking at your symptoms. Your ANA is high enough for a diagnosis, along with that additional bloodwork and given your history of symptoms. Renal acidosis is not an uncommon finding in someone with primary Sjogrens Syndrome. A lot of your other problems are very common in SLE. You probably have a crossover disease of both if one wants to speculate :hehe:

When you mention the positive antiphospholipid antibody do you mean the Lupus anticoagulant - seeing as your Cardiolipin antibody was negative? A positive on either one of those tests provided they are repeated 6 weeks apart and found to still be positive would be significant. With a history of clots and this follow-up testing and one of those positive it would be enough to get you diagnosed with APS (antiphospholipid syndrome) which quite a few here have along with their Lupus. It can be found with Sjogren's too and also can be a stand alone diagnosis with the patient having no other illnesses. The antibodies by themselves without any history of clots can be found in SLE. Gets complicated doesn't it :hehe:

Lupus tests including ANA can fluctuate a lot especially once treatment has been instigated. Plaquenil or Pred can revert positives back to negatives and therefore the test is useful for diagnosis but not necessarily as a monitoring tool as to how your disease is going. Far more important are the symptoms you are still having. When diagnosing they take past positives into consideration as long as there was no other reason for it (i.e. infections and some other conditions can cause a fleetingly ANA positive result). It is said that around 2-3% of SLE patients will never return a positive ANA titre. They are classed as sero-negative and their diagnosis is usually supported by either a positive on an Ro-SSA test, a skin biopsy or kidney biopsy.

As far as your meds go what treatment are you on for the migraines? It's a shame you are allergic to aspirin because if they are related to APS that's all some people need to get relief. Does anyone monitor your INR bloods? If they are not at a desirable level and this is APS then you might find that an anticoagulant would be the way to go. You may already be on one though? seeing as you list blood clots as one of your symptoms.

Migraine type headaches are common in Lupus themselves sometimes and nothing to do with having or not having APS. If that's the case often getting the Lupus under better control will ease the headaches.

Did your Rheumy suggest going to 400mg Plaquenil daily before trying the Methotrexate? Unless you are very small in stature and weight 400mg daily is our usual dose, provided we have a clean bill of health as far as the rare risk of adverse eye effects go. I would be inclined to increase Plaquenil before adding something like Methotrexate, but maybe he has reason not to increase it? If he doesn't then his logic isn't understandable.

Methotrexate despite some bad publicity is a very effective widely used drug, it is especially helpful for joint pain in Lupus. Many here are on that drug with some possible initial nausea the first month or so then smooth sailing and nothing but positive benefits. It's important he prescribe Folic Acid along with it to counteract some of the negative side effects. Even those few whose nausea does not subside were switched from oral metho to injectable form which they can tolerate much better. Monthly blood tests are a necessity to monitor full blood count and liver function. That way they keep a close eye on you and should there be a problem then you are taken off the drug. Most people tolerate it very well though and the blood tests are just a precaution. It's important to note that you will read about this drug in relation to much higher doses given to cancer patients, so therefore some of the problems listed do not occur with the much lower doses we as Lupies take.

I hope some of this helps and encourages you to ask more questions, we will try and assist if we can :)

Meanwhile I wanted to wish you good luck with your Nephologist appt.

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Hello Lily,
Thank you for your response to my post. I was afraid that I had included too much information before but I don't mind if you feel it is okay to post it. I take a literal cocktail of drugs every day. I am already on 400mg of Plaquenil I forgot to say that I take 200mg twice a day. I take 120mg of Procardia XL for my Reynauds, the 8mg prednisone, 400mg Topamax for migraines, 16mg Atacand for migraines, Plavix for my clotting problems, Zegerid for my stomach, bethanacol for my stomach, Levoxyl for thyroid, Fergon iron supplement with vitamin C, potassium supplement, and my asthma meds. Then I also have my rescue meds for my migraines Fioricet , nitroglycerin for aura, Zofran, Phenergan, Dilauded, DHE injections. I have hemiplegic migraines. My migraines became very severe about 4 yrs ago and I am now unable to work. I also have Maxzide for swelling PRN. Melatonin PRN for insomnia.

What surprised me the most was to see people say in their posts that they have migraines and insomnia. I struggle so much with this in my own life. I have literally lost my job due to migraines. I worked in a pediatric intensive care nursery, but my migraines are so severe I faint. Now also maybe my low potassium may have something to do with it too.

I think the worst is that I have fatigue all the time and joint, bone pain. When I get cold there is no warming me up again either.
I am petite only 4'10" and the prednisone has added unwanted pounds.
I also worry about bone loss.
As far as the APS they are telling me that I probably do have it 2ndary to the Lupus and I continue to clot anytime I have an IV, blood draw or injure myself forcefully enough. He (hematologist) is afraid to use anything stronger since I am of childbearing age and have had issues with anemia already.

I think I will eventually have to go on the methotrexate. I just bought myself some time over the holidays. It is still a little scary and maybe I will wait and see what is going on with this kidney situation first. Unfortunately my appt isn't until the 28th.
I do not know anyone else with Lupus although I have taken care of patients with Lupus in the past. It is totally different when you are the patient..

Well I wish you a Happy and Healthy New Year

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Dear Sophie,
Not only is Methotrexate a very good treatment it is steroid sparing, so would probably help you reduce the prednisolone, you are not on too high a dose and may find that a little decrease would help shift those pounds.

Methotrexate can cause nausea and feelings of sweatiness to start with but it is well worth it and the side effects do go fairly quickly or at least in my experience.
Good LUck and sorry to hear you are so desperate.
x Lola
Dear Lola,
My urologist said that Methotrxate can be hard on the kidneys. I have not seen this anywhere in my research and even thought this was the treatment of choice if you were having some of the more serious Lupus problems. I suppose I should either call my Rheumatologist's PA who is available to me for questions or I can wait until I see the nephrologist. Now that the holidays are over I can take some action. I think I have been feeling pretty desperate because my 13 year old daughter is also being evaluated for joint pain and swelling.
Ashton's lab work came back negative but my rheumatologist said he would not accept the pediatrician's results and suggested she be seen by a pediatric rheumatologist. He insisted that if my pediatrician did not agree he himself would see my daughter. He said this was based on my history and illness. My pediatrician did agree with him and she contacted a hospital here called Scottish Rite in Dallas. It is run by the Shriner's Association. The doctor there had her run some more tests on my daughter and based on the results started her on naproxen 500mg twice a day until we are able to get an appt with him.
So I have no idea if she is going to end up having Lupus too. My brother in law has something called Reiter's Syndrome which is genetic and it is also a possibility.
So I suppose I am somewhat stressed. I was also under the impression that my migraines had nothing to do with my Lupus. It appears from what I have been reading in the posts on here if you can get your Lupus under control then your migraines get better. If my migraines were better I could go back to work! That would be GREAT!
Thanks, Sophie
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