View Full Version : Two Days in Paradise and Several Changes in Treatment Plan--Long Post

02-11-2011, 07:07 PM
As you may have read in Marla's post about her being in San Francisco recently, I, too, made the trek and returned home last night.

I started with a day spent at the SICCA Clinic at UCSF. I was initially referred there by my rheumy two years ago for possible Sjogren's Syndrome. They determined that I didn't meet their criteria for Primary Sjogren's (PSjS), but I do have Secondary Sjogren's (SjS). As a participant, you agree to return two years after the initial eval to see if there have been any changes. My mouth is not any drier, though it's not producing any more saliva than two years ago either. My eyes are a bit drier, but I'm certainly better off than many. The lip biopsy was not the least bit bothersome--two little sutures on the lower inside lip that are now gone. The rheumy that examined me commented on my obvious Raynaud's and white fingernails and the importance of keeping the core body temperature warm by wearing a scarf, hat, socks and gloves--even inside my house. When we discussed my difficulty with staying asleep in the past two months and my longstanding diagnosis of Hypersomnia and Restless Leg Syndrome, she questioned me on a stressful event that may have triggered the SLE/SjS flare that brought on the diagnosis and if I had had any prior complaints similar in the past (which I had). The rheumy said that AI issues are there (albeit dormant) but there's usually a stressful event that triggers them in to full blown disease (if that makes any sense). Yes, as a matter of fact there was a stressful event Doctor, it's called the ex factor. I wholeheartedly believed that the stress of dealing with my DH's toxic ex is what triggered SLE/SjS in me, but that's another story........................

The next day, I saw the motility specialist for evaluation of gastroparesis (GP). It had been a while, but with my Dad's passing, son's wedding and the holidays, I'd been too busy to make the trip and honestly, I'd been managing my symptoms pretty well by reducing my portion sizes and not eating raw veggies. The last time I was in their office we discussed implanting the gastric pacemaker in my stomach. Years ago, through testing, the doctor determined that my stomach isn't stretching to accomodate food like it used to (kind of like having gastric bypass without having had the surgery) and the contractions are now uncoordinated so they aren't working together to grind up the food and moving it in to the intestines. I wasn't real keen on the idea of the pacemaker because stats have proven that it's only about 50% effective in non-diabetic GP patients. It seems that it's more effective for people that have GP from nerve damage (neuropathy), which is usually a diabetic. That's a very invasive surgery for only a 50% success rate.

So, the nurse practitioner is reading my chart and tells me that it's great I've lost weight (two years ago my BMI was 34.45 because I was only able to digest simple carbs), but if I con't to lose weight at the rate I am, there could be trouble. "Listen," I tell her, "I'm finally at a normal BMI, don't try to fatten me up with this pacemaker." She tells me that they should have approval to implant a temporary pacemaker in 3-4 months. I agreed to be a test subject for that because it is done with an endoscopy-the lead wires are placed through it and you wear the pacemaker on the outside of your body for a week. This way, I can see if it will work for me before putting myself through a major surgery. If anyone is interested in seeing what a gastric pacemaker is, you can google California Pacific Medical Center/William Snape, MD and there's a brochure on it with pictures and everything :)

Later in the afternoon, I saw my rheumy, who I think is awesome. We discussed my hair loss. I kid you not when I tell you that I have gone from a 45 minute blow dry to 10 mins. I am leaving my DNA everywhere! Last week, it was in our dinner two nights in a row. My DH teased that he was going to buy me a hair net. I know he was trying not to make me feel bad, but it was just gross. Anyway, Dr. C inspected my scalp and said that she's concerned because she didn't see any new hair growth. I asked her if it's because of the Imuran that I started in September. She said no, the dosage I'm on (100 mg) doesn't cause hair loss like I've had. And I was so sure that it was due to the Imuran. She said that it could be another AI/Raynaud's or a circulatory problem i.e. no blood getting to the scalp. Now I'm really bummed. I thought I knew the answer. I take 4 mg Folic Acid daily, as well as Vitamin B-6 and B-12 and Biotin and it's still coming out in hand/brush fulls! I had a head of thick hair previously, which is a good thing because it's very thin now. It doesn't look it because I had it cut in layers and curl the heck out of it. My hairdresser even mentioned how much was coming out in her hands when she was cutting it last week....

Dr. C wants me to taper off Plaquenil over the next two weeks; wait two weeks and then stop Imuran to see if both or either med is (was) helping me. I've developed back pain over the last four months and hip/thigh achiness the past three weeks, which could be related to the new RLS med I'm taking, I'm not sure.

She gave me an RX for Evoxac, hoping that it'll produce more saliva and moisten up my GI tract some and help my digestion in the process.

Dr. C felt under my jawline/neck and asked me if it hurt, implying that she found something enlarged, perhaps a lymph node? I know it wasn't my thyroid that she was referring to because it was higher up that she was feeling.

Anyway, I had an uneventful drive home and was happy to sleep in my own bed last night. I reduced my Plaquenil today and started the Evoxac. We'll see if there's any appreciable difference. I hope I don't start singing the blues without the Plaquenil. I've read many a story about people going off Plaquenil because they don't think it's helping, only to find themselves MISERABLE without it. I hope I'm not one of them!

Has anyone stopped Plaquenil only to regret it later?

What have you been told about hair loss? I know we've had threads on what to do about hair thinning, but I don't recall a thread about the reason why it thins....your thoughts?

02-12-2011, 04:01 AM
Sounds like they've got a good plan for you. About the hair loss, mine has been steadily falling out for about 35 years, due to thyroid issues. Don't know if you have that problem. I'm the toxic ex but in my case it's the new wife who causes everyone's stress. We all have to walk on egg shells around her.

My only thoughts regarding stress is to go with the flow, it always works out in the end. It got me through raising 2 as a single mom. It might help you

good luck and good thoughts your way

02-12-2011, 05:55 AM
It sounds like you are in good hands.
About the hair loss, mine comes and goes, with or without meds.
I am wondering why your doc is tapering the plaq, because my rheumy told me to stop plaq when I started MTX.
The plaq worked for me for about six months, after that I went back to my usual pain. If I am worse off now? I can't say, because the MTX was stopped because it did a number on my liver. Right now I am not on anything, because the doc has to figure out what he will do next, after my liver enzimes go back to normal. I am in pain 24/7.
I also have enlarged lymphnodes, sometimes they are painful, but always go back to normal after a few days. They are mostly in my jaw.
I don't know, if this helps you at all, but I hope it does.


02-12-2011, 08:53 AM
Thank you for your responses Nonna and Debbie.

The ex is a non-issue these days, Nonna, but back in 2005 she was front and center and causing all kinds of stress/drama in our lives. Getting married to a parolee has shifted her focus from us to him. Yep, she's a piece of work.

Another reason I think my rheumy's tapering me off Plaquenil and Imuran is to see if they are contributing to numbness and tingling in the extremities My liver's been fine on Imuran. Occasionally, my WBCs go down a bit, but they always go back up.

02-12-2011, 11:54 AM
Raises my hand about the plaquinil. I went on a tear when my GP said "this is Lupus no matter what the tests say". I was sooo happy but I was also ticked off. Everyone has said "it can't be Lupus because your blood work fluctuates so much. I knew better then that but I decided if they needed to see me sick then by god they could see me sick! In that moment I decided to come off the plaq. That was only two and a half weeks ago and my body has gone into a complete stage of dysfunction. First came the hives all over my body that led me to the ER. Next came the new lung issues that have me coughing and wheezing so bad that people around me can hear it! I am having to use my inhaler and the adviar again. Last night it was so bad that I thought another ER run was going to have to happen. Needless to say I started back on the plaq again. This morning I tried to hold some chocolate milk and my hands wouldn't stay closed and were twitching so badly that I wasn't able to drink it.

It takes so long for the plaq to get in the system and work I had no idea that it could turn my body against itself in under 3 weeks. I hope it goes better for you but that is my story.

As for the rest of your post, it seems like they have everything under control. You seem to have a good team working on you and that is always a good thing!

02-12-2011, 03:17 PM
OMG tgal! Three weeks and that's what it has done to you?

Did you just stop taking it or did you titrate slowly?

Have you resumed taking it yet, if not, why not?

02-12-2011, 03:39 PM
My hair comes and goes as it pleases... it leaves my scalp, and comes out in my ears... But that's a guy thang.

But seriously, if you have thyroid issues, that will affect the hair also. I'll lose hair when my count is dropping, then it'll "stabilize" when I'm steady low. When I then do the increased dose of synthroid, the hair starts to fall out again until the levels stabilize higher...

02-12-2011, 03:39 PM
LOL YES I began taking it again. I started yesterday. When the hives happened I thought it was a reaction to a new med. Then when the breathing issues started on Thurs. I was hit over the head with a rock that said "hey dummy. Do ya think it could be the plaq.?" I started to really look at things and figured out at that I had boils and hives before the plaq but I haven't had them in a long time. I also had to use inhalers and other meds to help me breathe but I hadn't had to use them except on a very few occasions and now my lungs are so bad that I thought I was going to have to call and ambulance to help me breathe!

I think that plaq works so slowly that even though I knew it made a difference I didn't know how big a difference. I went from 400 mg to 200mg and then I was done. I was gonna SHOW those doctors something. LOL Yea, showed someone but it wasn't the doctors. It was me!

02-12-2011, 04:38 PM
Hi BonusMom,
I'm so happy for you that you have such a good team of docs. I'm going to call Dr. C next week. Jeff and I have appointments in San Fran on June 24, so I'm going to ask for one with her on June 23 if possible.

I read with great interest the part where the rheumy at UCSF said that AI issues can be almost dormant until you have a big stress event. I was having mild, but manageable symptoms for years, without paying a lot of attention to them. It was when we went through the stress of my mom-in-law dying, and Jeff being away so long taking care of her and handling the estate, that I REALLY got sick. It all just kept getting worse from there.

That gastric pacemaker thing sounds pretty high-tech. I hope that it helps you. Lucky for me, a daily Prilosec still does the trick. I also hope that something will reverse the trend for you with losing your beautiful blond hair. That is just not a good thing for us ladies.

I'm seriously considering doing what Mari did, once I get an appointment with Dr. C. My bloodwork seems to contradict what I'm telling the docs so often, that I think I should just go off of the meds before I go up there so that my bloodwork can finally show something again. It did show SSA and SSB positive, ANA specked and positive and quite a few other things when I first got to see my good rheumy in Texas, and I was on no meds at all at the time. I have that lab report, but my current doc isn't interested in it. I'd like to let Dr. C see a good, full-blown flare.

Isn't it awful that we keep having to prove that we're still sick?

02-12-2011, 06:20 PM
Yes, I'm amazed that you're having to go off meds to prove how ill you are Mari and Marla. It really saddens me that the docs refuse to see it. I'm happy that your new "old" PCP, Mari, has returned to the scene and is willing to treat you based on your symptoms.

Marla, I think Dr. C would look at your TX labs and your labs from the SICCA study and be satisfied with that. I don't think she'd make you go through the agony of going off all your meds just to prove your case, but you need to do what you feel is right in order to get the best care that you need when you go see her. And, if you're looking for a June appt., you should be fine in calling now for that time.

I have to say that I am a bit concerned about the lung issues as I was diagnosed with asthma a few months after my SLE/SjS diagnosis. Prior to that winter, I'd never wheezed a day in my life. Now, I can't walk a block in the winter without gasping for air. I absolutely don't want to experience what you have, Mari.

I did think about my hair loss being associated with my thyroid. It's been a couple of years, jmail, but they did test my thyroid--TSH, T3 and T4 only. I'm wondering if I should ask my PCP for a current test and ask for the more extensive testing, not just the basics, based on all of my other AI issues. I understand that the guidelines have changed (I can't find the word for it, but there's a new "normal"). Can you tell me what labs I should ask for?

Thanks for the support, everyone. This just stinks.

02-13-2011, 07:05 AM
When you had you THS, T3 AND T4 tested were you high, mid or low in the normal range. the reason I ended up with an endocrinologist is the even though I was in the normal range my dose of synthyroid wasn't high enough. He doubled my dosage and things got alot better. My hair loss slowed down quite a bit. I'll have my daughter help me upload some pictures.


02-13-2011, 08:56 PM
I've been reading a bit on the thyroid lately, and some of the "old-time" docs think that lots of folks are hypo-thyroid, and don't know it because they rely solely on the blood tests. Their opinion is that a basal body temperature should be used for a more accurate diagnosis. Quite a few of them also think that desicated hormone should be used instead of the synthetics. That's what an SLE patient needs, isn't it? More opinions... lolol

But yeah, TSH, T3, T3, probably liver function and lipids... Seems to me that there's another they do on me... I get mine checked every 6 months or so, since I've got malabsorbtion issues, and don't always get the meds into me that I should.

02-14-2011, 07:49 AM
Thanks for the info on the thyroid Toni and jmail.

My mom emailed me and suggested I ask for a Free T3 and Free T4, in addition to the tests you mention. My mom is hyperthyroid and I have several cousins that are hypo.

When I looked at the symptoms, I instantly saw myself as hypo. When you have 9/10 listed symptoms, that's a pretty strong indication. I will be calling my primary. Coincidentally, last month I took pictures of what I was leaving in the drain and taking out of my brush so that I could show him, if necessary

Interesting, also, the links about CVID jmail. I'll have to research that when I get to work.