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Stopping Copaxone-Skin issues

Well, I gave it a month & I have to give up.
The fist week went ok. I got huge welts when I injected with redness that stayed a couple of days, then the swelling went down to the size of a lima bean.
Well, those original beans are STILL there after a month & they hurt. Now when I inject I get a 3"x"4" swollen, hard, painful welt & they aren't go down. I have 3 that I am dealing with on my abdomen, so wearing clothes is horrible.

I was really excited that I was doing something to slow my disease, so I am a bit sad. However I am very active, I have to work & chase kids. I can't have an hard, swollen, painful body. My neuro of couse wanted me to keep at it, but I am very thin & small. Those abd. welts are taking up almost my entire abd. shooting area. No way...he is looney.
He also wants me to try Rebif. No way. I won't be complient on that. I don't want the side effects. I may change my song after my next major relapse, but this is where I am now.

So, add me to the list of those out there praying for an oral medication.
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306827 tn?1279028740


I had similar issues with Copaxone. Have a couple of photos of my arms that would make straight hair curl and vice versa.

Went off them for a few weeks and with my neurologist's OK, said I wanted to give them another try. I've taken my arms out of the rotation (issue is, not enough fat there). I rotate 5 sites rather than 7. Sometimes bad welts, sometimes not. No matter how I try to keep everything consistent, it is luck of the draw. However, I don't get the massive, hot and hard welts I was getting.

For me - the syringe needs to be room temperature, then I warm it to body heat in my hands. I use autoinject, as deep as it goes (10mm). I pinch the skin up, but try to get it loose at the same time (easier said than done).  I'd rather a sting that a big welt. Working out OK so far.

I didn't want to use the other DMD'S because of all I'd heard about flu-like symptoms and aching etc.
Helpful - 0
Avatar universal
LDN is not a viable option when it comes to MS meds. Reports, anecdotes and testimonials are not scientific proof, and of course we don't know how many people have tried it and quit because LDN didn't help them.

Most of us get so impatient when it comes to new med trials, but actually the snail's pace is good. We get clear evidence that we can rely on. Thus far, the only MS meds that show proof of effectiveness without major risks are the CRAB drugs.

Growing, I know how it is to get unbearable reactions to Copaxone. I went down that road a couple of years ago, and ultimately had to quit too. I urge you to give yourself a month or so to to recoup, and then try one of the interferons. I switched to to Avonex and have no skin reactions whatever. Since I do the shot at night, and take an Ambien and one or two Aleve, I almost  never get flu kinds of symptoms. Aleve is wonderful for me, and Avonex is only once a week.

You won't know whether you can tolerate an interferon unless you try. Many do extremely well on them. Giving up on all MS meds could be a mistake you will pay for for years to come.

Hang in there.

ess
Helpful - 0
739070 tn?1338603402
Hi,

Taking a DMD and which one is always a  hot topic between MS'ers. My information is anecdotal but I am fair -skinned and I had reactions including welts for the first 3-4 months but I stuck with it.

Eventually, the reactions decreased in size and pain as my body adjusted. I have never reached the level doublevision speaks of , where she can't tell where her last injection was but the post-injections site are only mildly troublesome and only for 24 hours.

My two cents is you should continue taking a DMD because you never know what the next relapse will bring. You need to weigh your choices carefully and do what is right for you. I agree that the DMD's in research are only 30% effective but it beats 0%. My general neurologist also quoted this statistics to me but a partial chance at protection of my mobility and lifestyle versus no chance was the deciding factor for me.

I do wish you luck in this difficult decision. Let us know what you decide. We are here to support you regardless of the decision you make!

Ren
Helpful - 0
667078 tn?1316000935
There are plenty on the forum who swear by LDN and that is great. I am not against it.

The fact is there have not been enough scientific proof LDN does more than relieve symptoms.. The double blind scientific studies either said it improved the MS patients Mental Health or that there was little difference between the LDN group and the Placebo Group. I am very interested and have read all the scientific studies.


Copaxone, Rebif, Avonex, and Betaseron have been scientifically proven to slow MS progression in RRMS in many double blind studies for several decades.

Skip Lenz's evidence is anecdotal.

I have asked several MS Specialists about it and they say the same thing the CRABs have been proven as of yet LDN has not.

The MS Specialists in my area will not prescribe it for RRMS patients because of the lack of Data. They will sometimes for PPMS since there is no FDA treatment.

Alex




Helpful - 0
1221035 tn?1301000508
LDN does show by report decrease in symptoms as well as progression....although there are no double blind clinical studies on the decrease in progression as of yet.

Reports show that around 83% of people with MS on LDN experience no further disease progression in both relapsing-remitting and chronic progressive MS.

The original patient on LDN for MS, now on it for 17 years, has not had an attack or disease progression for 12 years since the one missed month that led to an attack.

Here is a link to a database of what MS patients taking LDN have to say about symptoms and progression.  https://ldndatabase.dabbledb.com/page/cancer-researchcopy/ddXxiaHj#

This is a quote by Dr. Skip Lenz
"As I have said before, if I had MS, the only drug that I would absolutely be taking is LDN..... In 4 years of dispensing LDN, with over 10,000 patient months, I have heard of only three cases of exacerbation... this is truly a no-brainer. I would find someone to prescribe it no matter the cost or effort."

Skip Lenz, Pharm. D
Helpful - 0
667078 tn?1316000935
LDN is for symptoms not progression.

Alex
Helpful - 0
1221035 tn?1301000508
I am sorry to hear you are having so much difficulty. Someone mentioned as to whether or not you have considered LDN. I have been using LDN since the middle of march and just within the last two weeks have been feeling better. I mean, I am having more good days then before.

The following information is written by a medical doctor Dr. Bob Lawerence, who himself has MS and uses LDN.

What is Low Dose Naltrexone?
Naltrexone is a drug called an opiate antagonist. Used to treat opiate drug addiction, it blocks the response to opiate drugs, such as heroin or morphine. Doses for this are 50-150mg. The idea of using LDN for MS was devised by Dr. Bernard Bihari, a practising neuro-physician in New York, USA. Low-dose Naltrexone (LDN) has been in use in the United States in the treatment of MS since 1985. It is used much less in the UK.

How does it work?
In MS, LDN works by briefly obstructing the effects of brain endorphins (the brain's natural painkillers). This has an effect of stimulating the increased production of these same endorphins, which in turn stimulate the immune system, thus reducing the activity of the MS.

What MS Symptoms does LDN help?
Neuromuscular spasm and fatigue. Also patients who are in the middle of an acute relapse when they start LDN have generally shown rapid resolution of the attack.

Dose
For MS, 4.5mg each day, taken late each evening. Early research shows that a dose of naltrexone 3mg is able to increase the level of T-cells by 300%. This benefit lasts around 18 hours.

Does it work?
Reports show that 98 to 99% of people with MS on LDN experience no further disease progression in both relapsing-remitting and chronic progressive MS. Dr. Bihari has more than 70 people with MS in his practice and all have been stable over an average of three years. The original patient who used this therapy has been taking the drug for 17 years. In addition, more than 2000 people with MS within the United States, have been prescribed LDN by their own doctors.

Side-effects
At high dose (150mg+) the drug has a number of significant side-effects. At the recommended dose of 3-4.5mg no significant side-effects have been reported. It should be noted that this treatment cannot be used by those people already receiving beta interferon, the two therapies are incompatible.

How soon does it work?
Around two-thirds have some symptomatic improvement within the first few days.


Best of Luck to you.
Helpful - 0
667078 tn?1316000935
All the CRABs, DMDs are equally good at slowing the progression of RRMS.

Keep in mind that relapses, flairs, exacerbations, attacks are usually caused by inflammation. When the inflammation dies down then so do the symptoms. At the same time in the disease without symptoms is nerve damage which is permanent and the CRABs slow. MS is a disease of inflammation and degeneration of the brain, theoptic nerve, and the spinal cord.

So is you have RRMS and are judging how your illness is progressing by relapses, attacks,etc. you are missing the point. The CRABs are not designed to help symptoms they are there to slow permanent nerve damage which can happen without symptoms.

Yes these drugs have some not so fun side effects but this is a serious disease.

I would rather deal with the side effects than be unable to see or walk. Once you get to that point there is no going back.

I would still be on Copaxone but my diagnosis changed to PPMS and my insurance won't pay for any of the DMDs, or Tysabri.

Alex



Helpful - 0
1142230 tn?1268675666
I started Avonex about 6 weeks ago.  It's one intramuscular shot per week.  I've had no skin /site issues at all.  As with all DMDs, there can be side effects, but for me it works great as far as side effects.  Of course, I've only been on it for a short while and can't comment on it's effectiveness at keeping my MS under control, but otherwise, it's way better than I had anticipated and skin problems are not a common issue at all with Avonex.  Just my two cents!
Helpful - 0
Avatar universal
Hi there,

I too had a nasty reaction to copaxone and had to discontine. If you go to my profile and then pictures I just put up a picture of what my reaction looked like.

This may help some of you, hopefully.

Sharon
Helpful - 0
572651 tn?1530999357
If you are interested in learning more, the results of the 15-year study of copaxone were released in February, and the success is rather impressive.  Google "copaxone 15 year study" and you will find plenty of reports.  Here's a summary :

After 15 years, 80% of all patients on copaxone were still walking unaided.  Around 2/3 of the people in the trial have not progressed to SPMS, which is pretty much considered a given for the next step of this disease.  They also showed that the EDSS numbers remained stable and in many cases improved for these people on copaxone.

It is pretty much agreed that it can take 6 months or so before the DMD's gain control in our bodies and begin to work.  

The other DMD's also post significant results.  Until we know the cause of MS, these drugs offer us the best shot, no pun intended.If one doesn't work for your body, please consider trying something different.  

- Lu

Helpful - 0
Avatar universal
i can empathize with you. i have the little knots on the hips and abdomen and the hive like things areound the injection sites.

for me, i worked way too hard to get the va neuro to Rx the dmd to want to quit taking it. when i have my exacerbations it is always on my mind how i so don't want it to get any worse and that keeps me taking the copaxone for now.

i've only been on it since january and have had two very discreet exacerbations and continue to have little consistant issues. so i don't know how long it takes to see if this copaxone is working or not.

i can't get much info out of my va neuro so i come here for answers. i may try another dmd in the future but for now i'll keep on this one.

i'm decently built and still have a bit of vanity at my age and i don't like the welts and
knots. though i seldom have my shirt off except for a massage and i'm not swimming these days due to some symptoms.

i would try the ldn but i take a pain med that would be counter to it

hope your choices work well for you .. let us know how it goes



Helpful - 0
382218 tn?1341181487
I experienced what you describe in my first couple of months on Copaxone.  Eventually my system adjusted to it, and now nearly 2 years later, I can barely tell where I injected the day before.  And since starting Copaxone I have had one very brief episode of ON in nearly 2 years, whereas before I was having significant relapses every few moths.  I agree that ceasing treatment is a gamble.  Waiting to try again until AFTER another relapses may leave you beating yourself up over what you might have done differently, incurring possibly permanent damage that might have been avoided.  I say 'might' because relapses still occur when on a DMD, but with less frequency as the research has demonstrated.  You're in a tough spot and I can understand why you'd be feeling the way you do, but just know that for me and many others here that are on Copaxone, the site reactions definitely improve for most of us with time.  We have one member that I'm aware of who had to quit due to what seemed to be an allergic reaction, crazy itchiness, etc.
Helpful - 0
560501 tn?1383612740

   I am going to agree with "YOU"!  I too stopped my Copaxone due to a couple of the same issues that you are speaking of.. I am also thin and having big sore welts are no fun trying to wear pants...And, I do not want the possibility of having those craters on my body  for the rest of my life.

   Perhaps to some, that may sound Vain...But for me, as of right now, that is the decision I am making for me.  

   Another deciding factor was that the statistics were not that impressive for me to continue to take the injections and cause these side affects. From what I have been told and read it has only a 29% chance of possibly not having a relapse. Those are not high enough percentages for me......

    LAST deciding factor, Doctors feel I may be going into Secondary Progressive MS.
AND it is not a "GO" for SPMS.....I go back to Neuro in June, so we will see what he thinks.

     All and all you have to make the decision that is best for you and what you feel comfortable with.  

Take Care,
~Tonya
ps, have you thought about LDN?  Just wondering......
Helpful - 0
Avatar universal
I have been on copaxone for 3weeks, I almost gave up the first week. I was getting the welts and pain. I talked to someone at shared solutions and she suggested I not go as deep with the needle. I use autoject on 4 thinner people need to use on a lower number. I started at a 6 which was to deep for me. Hope this is helpful. Linda
Helpful - 0
338416 tn?1420045702
I had similar problems with Copaxone.  What caused me to stop taking it was financial problems, rather than the side effects.

I would recommend trying Betaseron and see if you have any flu-like symptoms after injection.  
Helpful - 0
Avatar universal
Yep, I agree -- it's really a good idea to try a different DMD, and NOT put all your hopes into the Oral Drugs.

I've been on 22mcg Rebif since Sept 2009 (dx MS July 2009).  I totally dreaded the anticipated "Flu" symptoms -- but miraculously, I've had absolutely NONE!!

So of course, I recommend Rebif, BUT I do suggest you ask to stay on the 22mcg longer than the 2 weeks in the titration pack, before you bump up to the full 44mcg dose.  Both my neuros have told me that it's fine to stay on the 22mcg (as I have)-- many of their patients (like me) never go up to the 44mcg.

Both neuros also told me that over 1/3 of their patients on Copax stop taking it because of injection site necrosis -- a particular issue for thin folks like me.

I do get a red spot at injection sites which lasts 2-4 weeks, but no pain, itching, or tissue damage -- and the red spot reminds me where NOT to inject on the next rotation.

Good luck -- and don't give up!
Helpful - 0
667078 tn?1316000935
If you are waiting for the orals because of less side effects you will be sorely disappointed. The side effects can be far worse.

The oral drugs are stronger than the DMDs and therefore have some really harsh side effects. They are meant for folks for whom the DMDs are not slowing the progress.

They are not simply the the CRABs in a pill form.

Damage is done in MS with out symptoms so although you may feel fine nerve damage can occur. It can occur anywhere in the body. All it take it the one nerve to be damaged which causes damage to that area for good. That is why it is important to be on a DMD if you can. This is why they try to get folks on one early in the disease.

There are two parts to the disease the inflammation which comes and goes and is recognizable  and the permanent nerve damage which may be subtle.

Everyone has a right to choose whether to be on a DMD. It is important to know that down the road getting back on the DMD may not help you.

Alex







Helpful - 0
1045086 tn?1332126422
I think I can understand your decision because I've been struggling some to make Copaxone work myself.  After two months it seems to be better.  I hope the improvement continues.

I would also urge you to try something different.  The other drugs are taken less frequently and not everyone gets the side effects.  You could always stop it as you have decided to do with the Copaxone.  

I totally respect your decision but wonder what you and your family might be feeling down the road if you don't at least try another DMD.  I have an in-law who chose against any MS treatment initially.  He's presently in a wheelchair.  For a long time you could feel the tension and resentment, even anger, between family members about what might have been 'if only...'.  We think our health decisions are all about us.  Legally they are.  In reality, those decisions impact many others.

Just something to think about once your skin feels better.  Sorry this choice didn't work for you.

Mary
Helpful - 0
572651 tn?1530999357
While I sympathize with the problems you are having with the Copaxone, I agree with your neuro that you should continue on some form of treatment.  This is a gamble - and if you lose it could be a serious problem for the rest of your life.  I will hope that doesn't happen to you.

The oral drugs do have side effects - just because they are a pill and not an injection doesn't mean they don't pose their own set of problems.

Google "gilenia" and read about this oral med, which will probably be the first one to reach to market.

be well,
Lulu
Helpful - 0
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