Injection site reation saga

[lawnerd]

[QUOTE=renee;25252]Sheesh that is a saga.
It's beyond saga, it's MS mythology except you are not being slaughtered or knocked up by the gods-
just smacked about by specialists.

renee, You made me laugh again! Thanks. My comment about your sense of humor was intended to refer to the above quote, not the leeches.

Now, if you can make leeches funny, maybe we can get you on Letterman.

[Lazarus]

Hi
After thebetaseron reaction I did Avonex and then copxone. Then I did large doses of IVIg for 8 years.
For the last dozen years I have doing chemo. Novantrone (I loved it best) and now Rituximab which is very helpful.

Take care.

[lawnerd]

More Surgery

Seems I spoke too soon about improvement in my now very chronic wound. End of July - 1st of Aug, another "place" began about 1.5 inches from 1st surgery/wound site. Doc cut into it in office and found it tunneled to initial site. Lots of scar tissue removed, but he said too much to handle in office setting.

Put me on double dose of 2x strength of antibiotic as precaution. I had taken this dose of same antibiotic before w/o problem. This time 104 lb me, lost 4 lbs in 5 days. Terrible nausea and generally felt terrible. It put me in the bed. Turns out I had no infection. All symptoms were totally from the antibiotic which I won't take again.

Been seeing surgeon once a week since 2nd site happened. On 8/16, I had 2nd outpatient surgery. Doc opened area between sites, but fortunately didn't remove any skin. After the surgery, I had a whole about 2" x 3" & about 1/2 - 3/4" deep. It is getting a bit smaller with time.

Minutes before the surgery, doc told me that he & the plastic surgeon had talked and if this surgery doesn't work, that they will do a skin graft. This was total opposite of what plastic surgeon had told me a few weeks ago. General surgeon's timing sucked and it really upset me.

At both office visits since 2nd surgery, doc has debrided some more scar tissue. [I think they couldn't see it all during surgery b/c of blood.] Doc does say now, given the situation, I am healing well. This week's debridement hurt a bit & I have hurt some since. I take the pain as a good sign, maybe we are dealing with viable tissue now - I hope.

Meanwhile, life can't stand still. I have developed pain in muscles in R arm, mainly upper arm, when I it move certain ways. GP thought it rotator cup issue, gave me Rx for compound topical & sent me to an orthopaedist. Ortho says no rotator problem and I start PT on Tuesday. I am starting to have similar pain in L arm & worried it is MS related.

Side note, compound topical Rx cost over $1,400. Insurance paid, but I didn't know til after I got it. I was shocked [doubt GP knows cost]. It isn't helping to speak of. Surely, GP could have given me Rx's for several meds which together would not have cost a fraction of $1,400!!

I guess it is a good thing that my work is VERY slow right now or I would have big problem getting to all of these medical appointments & seeing dental surgeon. I am worried about handling what little work I have and starting the BG-12 [if it is decided next month that I should do so.] Not good thing that I had to let both of my assistants go this past week. They've been with me for years and are friends. Very hard decision to have to make.

I hope everyone has a good Labor Day weekend,
lawnerd

[SalpalSally]

(((((((Lawnerd)))))))... so sorry for your illness.

[Lazarus]

Oh! What. A time you have had...

What can we say? Here's hoping you have a restful and pain free weekend.

[stillstANNding]

Oh Lawnerd, such an uphill battle. I am sorry for your pain. All of the appointments alone suck up so much energy!

What is in this compound for your shoulder?? The price of gold was $1405 yesterday!

Best thoughts for you and your business,
ANN

[lawnerd]

Thank you all for your well wishes. I feel a bit guilty. Having this big hole in the cheek of my behind, having to change dressings and pack it multi times/day, and multi trips to the surgeon are a "pain." However, the wound is not causing me any pain to speak of. Docs cutting/debriding it does hurt some and warrants a big dose of motrin or tylenol. But otherwise, I am having little more than an "ouch" every once and again - reminds me the hole is still there.

Too bad I am a law-abiding person. I could be a successful drug dealer were I to sell all of the narcotics that I have been offered and prescribed this summer - LOL. I am quite sure I could make more money dealing those drugs than I am getting from work these days. Guess I will have to settle for being grateful that I haven't had a need to take any of those drugs.

I do hope you all have a wonderful Labor Day weekend.
lawnerd

[Cherie]

I just saw this! So sorry to hear all that you are going through with site reactions. Not fun. It does not sound like you are a candidate for the injectables any more and the orals have so many side effects. have you considered trying Jeanie's suggestion of LDN? It shouldn't hurt and it may even help. I'd print off some info on it and ask your neuro if, with all the complications you've experienced , this might be worth a try. Not covered by insurances but not costly. Are you getting enough protein in your diet to create new tissue?

[lawnerd]

Sally, Fortunately, I rather quickly regained my precious 4 pounds.

Yesterday, I had my 1st session with physical therapist about my arm. PT says he thinks issue is with my C-5/6, not my shoulder although he seemed to imply that if I don't work in it, rotator cuff could become involved. He gave me some neck exercises to do daily and says he will do some ultrasound heat thing a couple of times a week for a few weeks.

Since I had nothing better to do today, I went to oral surgeon for follow up appt to my tooth removal and bone implant surgery. All is good in that department except looming $$. I return in 3 mos for some sort of 3D imaging which isn't covered by my insurance [assuming I still have dental insurance by then - which is questionable.]

Cherie, As always, thanks for your wise comments.

Protein intake and nutrition related blood test results are all in very good range. My diet is far from perfect, but as far as meat & veggie eaters go, I am probably in top 95% nutrition-wise. [I know I should eat more calcium, a few less sweets, and I should probably cut my 1-2x/week french fry habit down to maybe once a month.] Other than my 4 - 5 cigarette/ day habit [down from 3 packs/day pre-2005 heart attack], systemically, I am a good healer.

Although I had done some research on LDN some years ago, I haven't thought about it lately. I just did some quick refresher research in reaction to Cherie's comment.

I agree, it doesn't look like LDN could "hurt" me. Were I to take LDN, concern I would have is whether or not it was working. Thankfully, I still have next to -O- clinical symptoms. Concern for my neuros is brain atrophy which is apparantly somewhat significant.

From the start my neuro has said his concern has been the significance of my disease progression showing up only on MRI. Then, while on B, I had probably 8 - 10 years of little to no progression, even in MRI's.

I got an MRI when I stopped the B, Sept 2012. I had another MRI in June 2013. The written report from the June MRI was the first one since my initial MRI which indicated disease progress. Said something like, "disease progression as is typical of MS is evident". Both my original Neuro and the MS Clinic director/specialist commented on significant brain atrophy shown in June MRI which seemed a good bit more serious than the radiologist's comment. [Nearly all of my other MRIs happened to have been read by same radiologist. Different radiologist read this latest one and that makes it a bit more difficult for me to translate as well.]

I can't find anything, even anecdotal, which indicates LDN slowing or stopping of disease progress has been shown with MRIs. If you know of such, please point me in that direction.

The more I learn about BG-12, the less keen I am about taking it. [I am not a candidate for the other 2 orals and the injectables are definitely out of the question for me.]

I see local neuro again in 2 wks. He is supposed to have spoken with MS clinic guy by then. Local commented that I may have gone from being relapsing/remitting to secondary progressive. Among other things, I think that would mean the BG-12 has not been shown effective for secondary progressive. However, I am not sure change is category is correct. Seems like all I have read over years about disease category distinctions refers to clinical manifestations, not "merely" MRI results. . . ? ? ? Anyone know if I am grasping at straws or if my clinical vs MRI distinction is significant in this regard?

Changing subject, I posted similar query to you on starting BG-12 thread: if you don't mind sharing, I would be interested in learning about the injection site reactions you mentioned that you had had with Rebif.

Might as well comment on progress with the ole injection site/wound -- it seems to be doing some healing. All but one area looks to be very pink and granulating. Still packing the wound and getting only fluid tinged with blood as opposed to a good bit of "goo" both before 2nd surgery and immediately after the 2nd surgery.

I am a bit apprehensive because I will not be seen by surgeon this week. Not sure what is going on with him and his office. First, I was told only day he would be in ofc was tomorrow [usual clinic time Tues pm's & Wed am's]. Yesterday, I was called and asked if I could come in at 1 yesterday instead of on Thurs. Then, I got a call a bit later yesterday to tell me my surgeon is on call all this week and his schedule had changed yet again with result of cancelling my appt for this week. I will see surgeon again next Tuesday...

Whew! As usual, I didn't start out to write the novel this has turned into.

Thank you all for continuing to put up with this saga/whine. Keep those perceptive and wise comments coming.
lawnerd

[SalpalSally]

Lawnard, no solid proof of LDN's efficacy, Except in small studies.
No MRI proof, as far as I know. Some Docs believe in it, but those
who don't just scoff at us users and don't prescribe, even though it
does no harm. Some prescribe it, knowing that it does no harm.

It's your choice, believe, as we do, that it will not cure you, but, it
raises your endorphins and simply makes you feel better and that's
more than the DMD's do!!

[agate]

lawnerd, you have so much going on that I'd hesitate to introduce anything new into the mix just now, even if it's something like LDN that might help.

The more substances you take in, the more complicated the picture gets. And you've got a lot of things complicating the picture already.

Whenever I have a health situation that needs attention--tooth extraction comes to mind--I try to clear all the decks I can clear and cut everything down to the minimum. That goes for meds too. If there's any meds I can get along without, I do without them. Just to keep the situation simple so that if anything goes haywire it will be easier to sort out what is causing what.

Just my two cents though. I'm not opposed to LDN although I've never tried it. Many people have found it very helpful.

[Virginia]

Lawnerd, never heard of someone going from R/R to Secondary Progressive without clinical symptoms being present. Seems to me that the injections were doing the job, though I know that you are probably now wondering if it was worth it. I believe you have been on Betaseron, which if I am not mistaken is one that causes more skin and site reactions than Avonex or Rebif. Someone might correct me if I am wrong on this.

I know it is Cherie you wanted to hear from about her Rebif site reactions, however since I have been on Rebif since it was introduced in the States in 2002 I will go ahead and tell you about mine. I get red spots that are sometimes small and sometimes get large, and some of them turn blue. They sometime last a couple of weeks, however they do not hurt and I have never had any indication that my skin was in jeopardy. I do not give them in the arms, so therefore my site reactions might be a little worse since I do not use all of the sites they tell you to. I get tired of seeing them, but since they are covered except for bathing and dressing, I just don't pay much attention to them.

I doubt that any Doctor would want you on an injectable drug for quite awhile. If you try Tecfidera maybe you could get your Neuro to let you titrate up at a slower rate than is normal. This might possibly help with some of the reactions that others are having. Also Cat Dancer says she is now over side effects from Tecfidera. I would not want to go on it, but if there was no other option, I am not sure what I would do.

Good Luck with your decision.

[Parsi]

... I believe you have been on Betaseron, which if I am not mistaken is one that causes more skin and site reactions than Avonex or Rebif. Someone might correct me if I am wrong on this.....[picked sentence out of quote]

I don't know about others (I don't remember hearing one way or other), but I had more trouble with A than B. I was on B first. Perhaps I had built up some kind of resistance since the problem happened toward the end of the treatment. Nothing too serious but a couple of the sites were visible months after stopping.

[lawnerd]

Parsi,

From what I have read, I think Virginia is right about this one - that more injection site reactions have occurred with B than with any of the other injectables.

I think those sources are probably pre-approval of Rebif. So I don't know how Rebif compares with the others.

Also, you inject B 3 times for every 1 shot of A. I don't think I have ever seen that fact factored into the statistics or studies. That 3 to 1 ratio could play a big role in the frequency of injection site reactions from B shots. I believe injection site reactions from C are also more frequent than from A. Assuming I am correct about that, then injection frequency probably is a significant distinguishing factor.

Of course statistics are pretty meaningless once you have a bad injection site reaction.

Take care,
lawnerd

[agate]

I believe injection site reactions from C are also more frequent than from A.

You're right. Apparently a subcutaneous injection is more likely to cause a site reaction than an intramuscular one, or at least that's what I was told when I changed to Copaxone.