What – Vitamin d deficiency and rheumatoid arthritis – isn’t this a Meniere’s disease site… Okay, so at this point you know I’ve diverged from talking about Meniere’s disease as much and now focusing on Rheumatoid arthritis. why? Well, frankly it’s been more of an issue for me the last year or so than the Meniere’s has. I have been pursuing Rheumatoligist appointments in an effort to get part of my life back just like I had been pursing allergy and ent appointments…

Vitamin D Deficiency and Rheumatoid Arthritis

Well, for background I’ve taken traditional approaches to Rheumatoid Arthritis treatment. That is to say, prednasone, plaquenil, meloxicam, methotrexate. Really those seem to not have made much difference over the last two years. I was afraid that I was heading towards being in that statistical area of people who have to quit work within 5 years after diagnosis and try to find a way to live on 800-1200 a month disability.

At 38 years old with a wife and two young children that really is not an option. (As if it is for anyone…) So I’ve been desperately looking for solutions. The most promising so far is antibiotic treatments. Pioneered by Dr. Brown and now the standard bearer is a Dr. Mercola. Basically the premise is (as I mentioned in the last post) that a bacteria, mycoplasma is responsible. This makes sense to me since my initial symptoms started after an infection that resembled the flu. For almost 3 months now I have been on antibiotics and things seem to be going well.

However as the weather has turned I’ve been waiting to see how my symptoms go. They tend to be worse over the winter and why is a mystery but my rheumatologist seems to recognize this as a fact that so many people see worse symptoms in the winter months. Why?

I’ve spent a lot of time musing on this. The last week I’ve noticed my symptoms were worse. This week was Thanksgiving and it was so much better a Thanksgiving than the one two years ago. I felt ancient then. This was so much better, but my symptoms had started returning enough to make me aware that I was not cured yet.

The day after Thanksgiving we had our first fully sunny day in a short while and it dawned on me one potential reason for the seasonal variation in symptoms. I’ve given a lot of thought and there are few reasons why winter should make much of a difference for RA. I mean, let’s face it, most of us have central air or at least heating enough that we are in 65-75 degrees through the winter (same as summer). Sometimes the humidity is a bit lower indoors in the winter, but that shouldn’t be a problem. There must be something else. I can’t imagine that the air pressure is that much different in winter than summer.

The sun…. I remember a year or year and a half ago. It was winter and I felt awful. Everything hurt. I desperately wanted to get out into the sun even though it was 50-60 degrees out. Maybe there is something to that.

Some quick research on vitamin D is that there does seem to be some link between vitamin d deficiency and rheumatoid arthritis. Hm…. research was done showing that people in the northeast were more likely to show symptoms of Rheumatoid arthritis. Promising… Maybe there is a link.

I’ve read more and more and am putting it to the ultimate test. I did spend a couple days out in the sun in short pants. Froze too! But I’m not taking the chance that the suns angle is too low for vitamin d production. (Vitamin D is produced when UV-b hits the body.) In just 10-20 minutes exposure you can generate around 10000 units of vitamin d-3. I looked through my supplements and discovered that I’m getting around 400 IUs of vitamin d from my supplements. The RDA is around 600 it looks like and so I’ve gone out on a limb.

I’m taking supplements of Vitamin d-3 now. 10,000 IUs a day. I’ve taken them for 2 days now and am curious to see if my aches may improve even more. From what I’ve been able to read about vitamin d deficiency. The symptoms can develop gradually over time. (So it may take years of being vitamin d deficient before you will see symptoms.)

By the way it looks like toxicity to vitamin d-3 is in the range of above 40,000 ius per day. Vitamin D generation in the body is not something that would contribute to toxic levels (sun exposure for vitamin d self regulates.)

I’m also now wondering if vitamin d deficiency my not also have a link with meniere’s disease as well as with the Rheumatoid Arthritis. Wouldn’t that be a fantastic connection! I am reading that there are speculations of several auto immune diseases that are exacerbated by or brought on by vitamin d deficiency. I’ll check back in on my experiences over the next couple months and let you know how I fare through the winter!

Health Stuff… If you’ve ever gone through it you probably dread the conversations you get. So many people mean well and try to help. You get all sorts of diet, treatment suggestions, news and magazine clippings…. it does get tiresome.

I have added to my diagnosis in the last few months. I’ve been diagnosed for the last two years with Meniere’s Disease, but in the last several months have received a diagnose of “likely” seronegative rheumatoid arthritis. I had been having joint pain all over since October (which was a rough month for flu bugs at our house.) I can’t help but think that may have triggered all the problems. Right now they’re trying to regulate medicines, but I’m on the prednasone, plaquenil, a couple of allergy medicines (as that is a trigger for the Meniere’s…. (sigh) and a myriad of more conversations I can have where I get recommended foods that are antiinflammatory. I know – they are trying to help, but good grief… sometimes you just need to try one thing at a time and see what happens. (Unfortunately many of the treatments take a while to take effect, or have side effects that are scary.)

May/June was a very active spinning stretch. I had about 5 episodes through a stretch of a few weeks. It seemed like a spin every 3 days. I think the start of it was a missing of the allergy shot due to a fever and then several necessary visits into the attic to identify a leak location. So, I’ve had it all lately vertigo (although it was “mild” vertigo – I didn’t have the MAD spinning that I have experienced before…)

I can’t help but wonder if the two diseases are related for me. Both of them seem to have inflammation as a symptom and autoimmune related causes. I guess my immune system is just working too well…

Here’s a weird note. For some 20 years I’ve avoided milk like a vampire avoids the sun because of several experiences of terrible stomach upset after milk. For the last 15 years I really had wished I could drink milk and resolved to try it again when I had a free afternoon (because I new I’d feel like I had a stomach full of knives afterwards.) Well. Sunday evening I took a chance and poured a skim milk, added chocolate (great cold drink for a late spring (Hot) evening btw..) No bad effects. So, every night this week I’ve done likewise and have been on a roll energy wise (I’m thinking that may play a part in my energy of late as I’ve been on this low dose prednisone for quite a while so I doubt it’s that.) If anything my stomach/digestion seems to be perking along better than it has been over the last several months.

So…. that’s weird. I’m assuming that before maybe it was the fat (I seem to recall that it was something like 2% skim and I think what we have is …. well best described as 0% skim.) Who knows, maybe my stomache chemistry has changed?

Sometimes it really feels as though if you change the routine just a little bit things go spinning out of control. Side effects from one medicine, change the timing of something and everything falls to pieces. For a long time I’ve been getting an allergy shot every other week (every second Monday.) I get a bit of ear pressure and roaring for a couple days. I feel like I’ve run a marathon and am worn out for a few days, but the spinning usually doesn’t hit. Well… we had a big snowstorm and I missed my usual time and made it Wednesday instead. It (as expected) hit me harder than usual. I didn’t make it to full vertigo but had a day or two of dizziness (moderate to heavy). I consider the dizziness to be a stage below the vertigo and it hit New Years day. (No alcoholic drinking was going on either.)

But currently that little bit of dizziness is the least of my concerns.

Back in October I had something that I thought might be H1N1. It was upper respiratory and I missed about 4 days or so of work. Then about two weeks later I got what we know was H1N1. That stuck around a bit longer but was just as fun (!) Around that time I had started having some pains in my left hand. Almost like electric shock running out my fingers. But by November both hands were doing it and there were strange achy joints everywhere as well. I mentioned the sharp pains to the doctor at my visit in mid October and he screened for a couple things and said it should get better soon, it may be slow healing but it should be improving.

Well, it improved a slight bit, but it seemed everything was hurting by Thanksgiving. I had a rough week prior trying to get all my work done before Thanksgiving and didn’t get much sleep and chalked it up to fatigue, but by the time the Sunday after Thanksgiving came around I really didn’t feel like charging into work. So, I somewhat glided through the next couple weeks before Christmas putting off until January what I possibly could hoping things got better.

My joints ache. I’m not sure yet if it coincides with my allergy shots (or the Meniere’s symptoms that fluctuate after the shots.) Given that Meniere’s may be autoimmune and Rheumatoid arthritis is as well I’m suspecting there may be a link. Also my Aunt had Rheumatoid arthritis and I understand there is a potential family history connection for that.

I’ve been to a doctor again and he ordered a long list of blood tests including 2 rheumatoid related, thyroid, folate and b12 level tests. But as you can imagine it feels as though things are spinning out of control again. I had been taking B12 for a numb spot on my leg which I since discontinued after determining I started the last bottle of b12 around the time this all started. I’ve had to discontinue the benadryl which I had been taking to try to keep the ear pressure at bay. (I had been taking 50mg each night and 25 or 50mg during the day depending on symptoms.) This has been the first shot cycle for me to coast without that or my allegra. (Although when I’ve had a sudden sneezing fit I broke down and took a 25mg benadryl. That happened twice in the last couple weeks.)

I don’t know quite what to do as I await the results of testing. I’ve already been referred to a rheumatologist, but am told it may be 6-8 weeks before I hear something there.

In searching around the Meniere’s forums I see others asking about connection between RA and allergy shots (which I find interesting) and many other chats about correlation between RA symptoms and allergies acting up. It makes sense as traditionally allergies cause inflammation in the sinus passages why not elsewhere????

Don’t know what to think really, just tired of this persistent aching and sudden pains out of nowhere. It’s not that it hurts so much all the time it’s just that it’s so persistent, unrelenting aching. Sometimes it’s punctuated with a sharper pain in a random joint for what seems no good reason.

(sigh….) I don’t know what to hope for. I don’t know whether to hope they say that I likely have Rheumatoid arthritis or that they don’t see anything that would indicate a problem. Sometimes you just feel like you’re going over the edge and if there’s no tangible proof of something wrong well…. maybe I’m losing my mind. Could my mind be making up all this pain? Anyway, I should hear something as early as tomorrow. Tomorrow is also the time to try and dive back in to work. I’ve tried to get some things ready over the last few days because I punted an awful lot of stuff to January. It’s set to be some month trying to get it all done. I just wonder at what point I have to just quit pushing.

As it is though, we don’t make enough to keep all these doctors employed….. Now I’m going to be adding another one to my “staff”. (sigh).

Here’s hoping things are going better for the readers out there in the ether.

First off, I think I’ve finally managed to learn how to spell prednisone! I was just about to call this prednasone and meniere’s disease… but I think I’ve finally got it straight. (Although my spell checker thinks it’s wrong either way. I guess I don’t have medicines in my spell checker?)

Anyway… I have been on prednisone again this week. This is, I think the 4th time I’ve had a short run of prednisone. It’s been prescribed with the idea that my symptoms are a result of inflammation. (I see a lot of references to prednisone being prescribed for auto-immune type issues.) Anyway, it’s been some week! Saturday night I had a lousy nights sleep. I was spinning in my dreams and woozy Sunday morning. Got the prescription filled and was starting to get things done Sunday evening (I think I worked on my antivirus removal tools page at hubpages that night.) I was feeling better though…. and then I didn’t sleep much that night.

Then Tuesday was the first day of school for our oldest and I didn’t sleep much going into Tuesday, then ditto Wednesday and Thursday nights as well. I’ve probably had about 2-4 hours sleep per night. It’s so frustrating I’ve gone to bed and just laid there. I close my eyes and just lay there, occasionally I think I drift off to sleep, but usually I wind up getting uncomfortable, rotating, looking at the clock, fidgiting. Get up and work on the computer because another thought came to mind. Go sit on the couch in front of the tv and try to be a zombie…. well… frankly trying to be a zombie isn’t necessary. This is because I’m still taking the benadryl as well. So…. I’ve got drowsiness from that, insomnia from the prednisone. But, hey, my ears aren’t stuffed up and I’m not spinning. So, it is a plus(!) I feel like I’ve put on 20 pounds in the meantime. (Prednisone always makes me want to eat every 2 hours I think..)

I feel as though most of the week I’ve been oscillating between my usual personality + high caffeine, some crazy lunatic that flies off the handle at little things and can make anything into a crisis and someone on dope in la-la land…. (I was translating beatles songs into spanish on the way home yesterday…. “in el pueblo en que nací vivó un hombre que zarpó el mar….” is it really submarino amarillo? oh nevermind….)

Well, I have got quite a few things done, but I’m really in need of some good sleep I think to get back to some sort of balance. (Temperament wise, the vestibular balance has really been better.) Do they sell straight jackets on ebay?

It seems like the last round of prednisone I was prescribed may have been a lower dosage to start out with (like 5 pills of 5mg on day one, stepping down to 4, 5mg pills, etc.) This time around it was 2, 20mg pills for the first three days and 1 for the last 3. It has seemed more effective this way, but like I say the side effects are tiring.

It has at least kept me from a really bad spin. Sunday morning was not fun, but I’ve had much worse. It isn’t often that “the vortex” invades my dreams like that but it’s not a good way to start the day.

I don’t know how else to put it, but the benedryl fog. The last month or 2 benedryl has helped to keep me from experiencing the worse stuffiness/tinnitus/spinning, but it’s making me feel like a zombie. I take a full dosage in the evening around bed time, but several days I have also had to take a half dose during the day. I’ve been taking one in the morning and if necessary (more crackling/stuffiness) then one in the late afternoon. That along with astelin and I feel like I’m just a fraction of myself. I don’t have energy or spark to get out and do anything. I spin my wheels at the work that I start, I feel like I’m thinking in oatmeal or molasses. So, today the question was what else can I try to keep the stuffy head stuffy ear/ear pressure away while I’m continuing with the allergy shots.

So, I have a few fresh prescriptions to try. One for allegra which I had tried some years back, although since the shots it seems that the allergy medicines have a better chance of doing something. Also, I have a sample and prescription for veramyst which is a new one for me. I really hope that between these I’ll be able to taper off the benedryl and not get back to where I was late May/early June. This seems to be an unbearable equilibrium I’m at these days. Either take medicine and be doped up or don’t take the medicine and spin, have vertigo, lose hearing. Gee…. isn’t there a third choice?

Anyway, we also talked about the possibility of adding aspergillus (sp?) to the shot routine which is a possibility if these other items don’t make a difference in the coming week/weeks.

It’s kind of funny, he noted that I had a bit of congestion as he checked out my nose, (I had taken a full benedryl last night at bedtime and a half dose this morning along with astelin at bedtime and this morning.) I told him that really this was pretty good as far as things went and was worlds better than 2 or 3 years ago.

This site is really coming in handy for me though as it gives me a good way to go back and review my case history before I go to the doctor. Everything is running together for me over the last few years. I have a hard time remembering when it was I started with which treatment or when I last had a more serious attack, etc. The paper journal that I was keeping I haven’t kept up with in some time so most of my events get recorded up here.

Well, time to press on and attempt to get some work in this afternoon. It’s really hard though the benedryl took my get up and went!

On the plus side I have had some promising news in other areas today so, maybe I can use that to psyche myself up to get some things done!

I think I mentioned that since that last round of attacks I had been perhaps a bit too eager to take my allergy medicines to try to fend off the next round of attacks. Well, after the really big slip up on a Thursday of Zyrtec the night before – 2 benedryl and then alprazolam (xanax)…. I had decided to not take zyrtec at all since 1) it was 24 hours and I had a tendency to forget the next day that I had taken it. 2) It really hasn’t been as effective as the benedryl. So…. I had been taking two benedryl at night (the full dosage and one in the mornings, one in the late afternoon to fend off the beginnings of stuffy ear. To put it simply the last few weeks I’ve felt fairly lousy. I seem to have no energy, no get up and go (all got up and went…) Well, Sunday evening it was almost a week since my last shot so I thought it might be time to lay off the benedryl and I didn’t take it before bed.

When I got up, my ear was NOT stopped up so, I didn’t take it that morning either. Monday was the best day I’ve had in a month. I had energy, some real enthusiasm, didn’t feel like Eeyore all day, got in my ~2 mile walk. I was jazzed! I didn’t take any benedryl Monday night and then woke up Tuesday morning with a stuffy ear starting. So, I took the benedryl first thing (1) and wihtin a little while I was back in the same fog. No pep, no energy, no enthusiasm for anything. I spun wheels half the morning. After lunch I actually took a nap before having to go to a late afternoon appointment. By about 9 in the evening I was finally feeling a bit better, maybe not jazzed, but at least not so low energy that getting up seems like too much trouble. (By the way, my ear cleared up sometime during the day, another sign that at least for me these symptoms are allergy related.)

I took 2 benedryl that night out of fear that I would wake up with stuffy ear starting. So, I slept late today (Wednesday) and had a very slow start this morning – not much energy. I didn’t take any benedryl this morning though and by afternoon I have been feeling back again! Now it’s early evening (a bit after 8 ) and I’m feeling pretty good. Fair amount of energy and seem to want to tackle a half dozen new projects.

Through all of this my head still feels a bit scrambled still from the last round of attacks, it’s like I’ve got to relearn to process the movements of my head/body each time I go through that. It seems like a slow gradual return to feeling as though I am actually “back in my own head”.

But that’s the dilemma it seems these days. I either take benedryl to ward off the stuffy ear and go through everything like a zombie at 50% of my usual intensity or don’t take it at all and run the risk of a spin in several days time as the symptoms progress. (Not to mention the funk you go into when your hearing closes down for several days on end.) I may be finding a bit of a balance by taking the benedryl just at night. I’ll have to experiment more I guess and see if I can cut it to just one at night and still manage to ward off the stuffy ear which is usually the start of the next attack.

On top of all of that, I’m also somewhat jazzed to actually find that there’s someone still in me somewhere that has energy and enthusiasm to do things….. the last few weeks I wondered where that person had gone. I actually have felt alive again 2 of the last three days!