Jul 202016
 

Dammit, and I thought for certain the itching was gone for good. I look at the date on the post and think time flies and it still has not been long enough for the itching.

This time the itching is a little different in that the itching started after the third dose (1g each) of solu-medrol. Because of the steroids and the fact that they can cause itching I played a mental game for a while as to what was causing the itching. I thought there are good reasons why it is better if it is the steroids. Importantly, I will quickly end the steroids and the problem should stop. Also, if the steroids are making me itch that is at least a cause which beats neurotically scratching with no cause. I just have this mental picture of me in straight jacket in the psych ward because of my crazy itching. 🙁

Sadly, I do not think it is the steroids causing the crazy itching. Here are a few of the reasons that I think most point to a multiple sclerosis issue:

  • The itching is at the same location as it was 12 years ago, my left arm. That said it is now in my right arm a little too.
  • The itching is exacerbated by heat. Usually some of my worst itching is at night while I am warm under the blankets. I can mitigate, get rid of, the itching by moving out from the blanket.
  • Itching never relieves the itch.
  • The itch seems to come from deep under the skin.

I know people posted lots of useful tips on dealing with MS itching in the original post above. Now I have some reading to do. Thank you for all of your suggestions and tips.

Adding insult to injury I have now scratched too much! Eriksgirl noted today that not only do I have an injury from scratching, but that it is infected. Eriksgirl banned me from itching the one site on my arm, better to just throw me in ice bath to curtail the need! Now I get to go my family doctor about possible cellulitis. Maybe a take away could be before neurotically itching be sure to hibicleans the site, your hands, and clean out from underneath your nails. 😉

Itching cellulitis multiple sclerosis

Eriksgirl marked lines on the swelling/infection to track to see if it was spreading. A few hours later the infection had spread

Jul 172016
 

Another exacerbation another round of Solu-medrol. I will get into the exacerbation in another post.

Dr. fail in ordering the medicines. He ordered everything but something to treat the stomach acid. I suppose it is also my fault since I knew I was going to get this treatment and I am the one feeling the burn. Fortunately Eriksgirl thought to check the pharmacy from my last treatment and there was a remaining refill.

IV with the the Solu-medrol waiting to be mixed

IV with the the Solu-medrol waiting to be mixed

Another difference this time is that the pharmacy did not mix the medicine in the bag Bandageleaving I decided to take a different tack this time so rather than a new needle each day go with an IV needle. I am normally a great stick but I think the Solu-medrol does bad things to the veins. Regardless the nurse was great and put on one of the best bandages I have ever had

Nov 272015
 
http://pinkunderbelly.com/2011/03/27/when-you-suspect-mrsa/

Picture of what the auto-infuser looks like. It takes an Hr. for it to complete.

First off the steroid treatment went better than any other had gone in the past. I did not have the horrible bad attitude, well no worse than normal, and my tastes were not negatively impacted. Day one of the prednisone went very well. The nurse offered to leave a permanent IV needle in, but it would be in my hand. I told her I do not mind getting stuck, my mistake. Day 2 a new nurse it took 8 sticks before she was able to get a vein that worked for her. This was not the first time tis has happened while I have taken prednisone. Apparently prednisone does awful things to your veins because normally I am a very easy stick. Unfortunately, day 2 was not yet over and because she ran out of IV needles and had to switch to her personal supply of butterfly needles I moved and the injection became occluded. I was 2/3 done with the IV and she asked if I wanted to quit for the night; I think it was pretty clear she wanted to call it a night and not battle getting another IV in me. I told her no I wanted to finish the medicine and two sticks later I was ready to go with a stern warning not to move. 🙂 Day 3 went much better.

In the interim I am supposed to have blood work done to test for the JVC antibody. I tried twice and lost the lab slip. I have to assume that was for the best because getting the lab work done is a waste of money. I do not plan on taking Tysabri or Tecfidera that carry the risk of PML at this time. The Dr. did think that Tecfidera was a good option for me at our previous visit. I do not plan on signing up for the Death Therapy as a treatment.

I will not do the interferons because I think they are garbage, and they did not do much for me. That only leaves Copaxone as drug, or nothing. We look up Copaxone and learn as much as you can without a full understanding of the immune system. 🙁 I also look up how much it will cost through my insurance. The drug is roughly $5,000 a month with a copay of $150. The $150 is doable, but I am on a high deductible plan so on January 1 I would have to eat the $5000! If that is the case it is a no go.

Off to the follow-up with the neuro. A minor exam and in his professional opinion I am walking better. I guess that is why he makes the big bucks because I had not noticed my walking had improved. 🙁 The rest of the brief visit was discussing Copaxone. I told him the $5000 price tag, and his response is that it is a very expensive drug to make it is not all profit. He sounded like a drug shill from Teva. If that drug costs more than $5 to make I would be shocked almost to death. There is obviously good money in drugs so I need to continue my own drug research. MVT with the proper marketing certainly can help a lot of people. 😉

To wrap this all up Teva/Copaxone called today. They wanted to discuss the initial setup with me. I said that is fine, and we got that all worked out. I then brought up their $5000 per month cost. She said that they can eat the first part for the high-deductible plan and possibly the copays from then on. I thought OK as they are gouging my insurance and I am making my insurance more expensive for everybody in 2017. 🙁

As a postscript I was looking at Tecfidera on the NMSS site. I could not shake the BG-12 name it had before it was Tecfidera. I was certain I had written about it, and I had. BG-12/ Tecfidera was a Mold Killer! Who in their right mind is going to take a mold killer as a treatment!

Feb 292012
 

I was pondering my use of Ambien today after reading a study that prescription hypnotics have a nasty “side effect” of death and cancer. Maybe I missed that when they were quickly listing off all the other side effects of Ambien in the commercials and literature, but it seems unlikely.

I seem to recall getting started taking Ambien when taking Solu-Medrol many years ago. I guess it all makes sense now. I hated Solu-Medrol, I just did not realize that the drug I was taking with it to sleep might be even worse. Fortunately, I never liked Ambien and wanted to try and drop it as soon as possible; that and it was pretty expensive at the time. The last time I took it was after I was “stuck on it” because quitting lowers your seizure threshold (another of its many side effects). While I certainly do not have the best sleep habits I think it is well worth modifying those before taking a sleeping pill.

So now we know that hypnotics are pretty bad the real question is which is worse Ambien or Tysabri? What happens if you are doing a “combination therapy” with the two drugs?

May 092008
 

Still waiting on my appointment with the LLMD, but while waiting I have the follow-up with the neurologist about the MRI. Surprisingly this was a relatively short visit. At my previous visit he said that he thought there is a lesion in the visual cortex (or something in that area. I didn’t take the best notes) that is causing the blind spots. At the previous visit he drew a picture (which I should share) of where he thought the lesion would be located. At this visit, and based on the radiology report, he said there is definitely a lesion in that area causing the problem. I do not begin to have enough neurology knowledge to understand the radiology report so I will have to take his word. On the other hand it seems somewhat reasonable since there are many other lesions in the brain. After his diagnosis he proceeded to take out a textbook to show where in the brain the lesion is located. The quick brain anatomy lesson was interesting, but even with his explanations the lesson was way over my head. 😉 Strangely, he did not discuss steroids (Solu-Medrol); which saved me from the hassle of telling him no. Overall I would say that this visit was worth the $25 co-pay.

To be continued with the LLMD visit …

Apr 282008
 

The only reason I continue to see my neurologist is because he treats the seizures. The reason I was not looking forward to this visit was because I was going to have to come clean about not treating the “Multiple Sclerosis.” When I suspected Lyme I brought the issue to him first, but he then referred me to an idiot infectious disease doctor. Because I did not see his doctor, and kept him out of the loop, he knows nothing about my Lyme diagnosis and treatment. Up until now he has incorrectly assumed that I have continued to take Rebif to treat my MS. The neurologist made it clear from the beginning that Lyme was outside the scope of his knowledge; keeping him in the loop would have turned into a unnecessary (narrowly avoiding an expletive) nag fest about the Rebif (it did digress somewhat to that point later in this visit). I brought Eriksgirl along to help keep up the fight. (Normally a visit is a quick follow-up and nothing of substance is discussed; no real need for Eriksgirl to be there and taking up her valuable time.)

We get the neuro brought up to speed that I am getting treated for Lyme, etc; leaving off the part that he referred us to an idiot. At first he wanted to move me to Tysabri because I am apparently doing so poorly on Rebif. At this point I came clean about not taking Rebif, which he could not handle; even with a Lyme diagnosis that is being actively treated. He then went on to add that because it is a vision problem he wanted to treat it aggressively and prescribe steroids (Solu-Medrol); though surprisingly not at this appointment. Of course I would not take steroids because they would only make things worse with Lyme due to immune suppression. Since he did not want to prescribe them now, but wait until the next appointment, that at least saved another argument. While he did fax in a prescription for Rebif it was a concession to avoid fighting. Also, they sent the prescription to MS Life Lines which was the wrong place to send it at this point; so that pretty much ended that issue pretty easily. I have an appointment coming up soon, and Rebif will probably come up. I will tell him I am pursing another path at this point, but that is for another upcoming post.

What I was interested in was idiopathic intracranial hypertension as a potential cause for my blind spots. Eriksgirl had already suspected I had higher spinal pressure because she had never seen spinal fluid tubes fill up so fast (she used to assist with lumbar punctures) when my fluid was drawn after my first seizure. Of course my spinal pressure should have been taken at that time; even though it wasn’t an ordered test. It is just good practice that if you are in that area you take spinal pressure. High spinal pressure can cause seizures. The neuro said that he didn’t think it was IIH induced blind spots because those blind spots (tend to be?) are around the optic nerve. I’m not fully convinced, but he is not ordering the test. Regardless, if it is Lyme induced IIH than the fix is antibiotics which I am already taking.

The neuro’s theory is a lesion in the brain causing the problem. Maybe. MRI time. At least it will be nice to see how the grey matter is doing.

Jan 172007
 

In response to Gwen’s post my exacerbation pre-dated the holidays. I am just a little slow to get to posting about the exacerbation, etc. (the exacerbation pre-dated Thanksgiving, and just being the 5 of us at home probably doesn’t count as holiday stress – just regular stress ;-). In fact the Solu-Medrol was completed weeks before Christmas. I also agree that many exacerbations just go away by themselves, most within a couple of days. This was not the case with the hands, and was the exact same track that led to the really bad exacerbation (from which there is residual damage). I did not want to risk any additional damage to the hands, and for the record I was recently re-tested and no carpel tunnel (nor any other tunnel problems in the arms) that would be causing residual problems.

Secondarily, does the cause of a significant exacerbation (holiday stress, etc.) matter other than for academic purposes. Regardless of the time of year, and surrounding circumstances I will treat hand problems aggressively. Conversely, pain, itching, balance, fatigue, dizziness/vertigo, numbness elsewhere, etc. will not be treated aggressively – and probably not treated at all (other than the normal routines). I think everyone needs to have thresholds with MS for exacerbations that are tolerable, and exacerbations that are not tolerable that will be treated aggressively. Some people may find walking problems to be more serious than I do, and treat those aggressively.

I’m curious, where do you work that you get 6 weeks of paid vacation (and are they hiring!)? (I get 4 weeks, but that is above average in my experience)

Jan 052007
 

By the Lord’s grace the last round of Solu-Medrol went extremely well as far as side effects. In fact other than trouble sleeping and stomach irritation I was pretty much in the clear. My hands have been doing better; so I guess it probably helped. On the other hand, as Gwen notes for herself, I may have just healed anyway.

When I went in for my follow-up I asked if I would be doing another month of Solu-Medrol (my old neuro liked three months of the treatment). He said no for two reasons. The first is because I did not need it; secondly, because Solu-Medrol tends to lose effectiveness over time. He added that there were two camps on why the drug loses effectiveness over time: (1) Your body grows resistant to the effects of the steroids; (2) Solu-Medrol is less effective because of the natural progression of the disease. If possible, he seemed like he tried to take a middle-of-the road strategy between those two views; which I guess works for me since they both seem reasonable.

Dec 192005
 

Well had another neuro appointment today. At least I am doing well, but that makes me like going even less. The only reason I mustered the energy to go was so that I could get order to make sure my liver is hanging in there. I certainly don’t want it to fail on something not fun like Rebif! Eriksgirl asked why he doesn’t write anti-depressants. After a brief discussion he said he does, but does not write Wellbutrin. Of course his medical assistant did not make that clear. Apparently, this stems from the original Wellbutrin had a seizure rate of 1 in 200 as compared to the antidepressant norm of 1 in 2000. He said this has supposedly been fixed in the Wellbutrin XL (what I was taking), but he is biased against them now. Of course I would have happily tried something different had the MA made that clear. Of well, hopefully no more Solu-Medrol and the need for antidepressants.

Jul 142005
 

As a bit of background my feet remain numb and my legs a little weak. Well in a telephone conversation tonight if my neuro knew about my continued problems. After making some joke about barring him being psychic then no. I said there is no point calling him because I’m not going to take anything (read Solu-Medrol) for this. I emphasized that the side effects are way too bad (and my thinking is that exacerbations are part of MS – save the Solu-Medrol for when you really need it!) I explained my horrific attitude that there is no making me happy and I treat everyone badly. The point of all of this was the next comment which was something to the effect of “doesn’t knowing that it is the Solu-Medrol help you to get over the feeling.” Truly a statement made by someone who has absolutely no clue, and that is good because I wish I didn’t know. I tried to explain it in terms of waking up in the worst possible mood x1000, but alas that doesn’t cover it. The things that MS opens your eyes about.