MonSter "Hug"

[stillstANNding]

I hope you do get your miracle, Gabrielle. I hope many things get better for you and your husband and the entire crew here at BT.

ANN

[Virginia]

Keep us posted Gabrielle as to when the miracle comes along. The rest of us may need it at some point. The way things are going for our people on BT we all seem to need a lot of help lately.

I honestly do hope you see some improvement soon. I also hope your husband does too.

[Gabriella7]

I spoke to the MS nurse and she said I did the right thing putting ice on the area. She said I should have been told not to inject on the inner top side of my thigh by the nurse that came out. Just stick to the outer thigh as that area has more muscle and the other has more blood supply. The company that supplies Acthar called a local company The Medi Group who have skilled nursing and personal care under the title of MediCareGivers and rehabilitation therapy and social services under the title of MediHomeTherapy. Does anyone think these might be the "death panels" that Abby spoke of a while back? OMG

I believe the tingling and numbness in my lower legs and feet is better but I still have the "hug". The MS nurse told me it can take up to a week before I will be able to see results. Then I may have to order Acthar once a month in order to prevent a relapse in the future. I have an appointment in a couple of weeks with the neuro and my husband has one also. He is still losing weight and is down to 125 and still no diagnosis.

I didn't go to sleep last night until 5:00 in the morning and then slept until 1:00 in the afternoon. Now if I could crawl out of bed and start cleaning my house that would be a miracle.

[Virginia]

Gabriella, I hope you are going to get some relief from Acthar - and soon! I also hope a diagnosis comes through for your husband soon.

[Gabriella7]

Side Effects

I am having some side effects that are not mentioned in the Acthar information so I'll be calling the MS nurse tomorrow. Primarily, pain in my back near the kidneys and I'm peeing like crazy. Using waaay more Depends than I have in the past and at this rate I'll be going to Costco tomorrow for another case. Also some weird sensations in my head, hopefully this is doing something good to the black holes and lesions in my brain.

I have had improvements in the numbness and tingling in my lower legs, some relief of the MS hug, and I feel like I'm wired but not enough to start going on a cleaning rampage. Maybe in a few days.

Just wanted to keep everyone up to date each day on this new journey. I feel like a trailblazer as I haven't heard from anyone else who has been on this therapy. Maybe I am part of a big experiment and don't even know it.

I've been reading on the UK Multiple Sclerosis Resource Center website.... articles about all the new orals in the pipeline. It's worth a peak just to instill some hope into this puzzle we are all trying to solve.

Gabriella

[Virginia]

Gabriella, if this is about the same drug as they had before Solumedrol, I knew a lady who was on that a number of times. Actually, I did not know her while she was taking it, but got to know her later. I think she had relapsing/remitting because she use to go from being in bed to walking so well you could not tell she had anything wrong with her. If it is the same one they pretty much stopped giving it when Solumedrol came along, so I was told. I did not hear her say anything bad about it.

[Gabriella7]

Yes and No

Virginia, you are right. This was brought up at the dinner meeting I attended. ACTH was used for MS back in the 80's and then came alone Solumedrol. Doctors switched over to Solumedrol and stopped using ACTH. I'm suspecting the drug reps promoted Solumedrol as the wonder drug for MS relapses. ACTH continued to be used for infant spasms. As I posted before the former price for the vial of 5 injections only cost $230. Now that it is being promoted for MS as well, the price has gone up to $30,000. The drug company may have re-formulated it into a gel as that is what is it now Acthar Gel. It is for those who have not received any benefit from the other treatments such as Solumedrol, IVIG, etc. Sort of a last ditch effort to "whip the dead horse back into running".

This is pharmaceutical greed at it's worse because parents that have to inject babies with infant spasms now have to pay $30,000 and most cannot afford the price unless they have exceptional insurance.

I gave myself the last injection tonight. My BP is up a bit but I can take more BP meds to bring it down if I need to. Now since I have relapsed again my type will probably be changed back to Progressive/Relapsing instead of Secondary Progressive. My new neuro had said he thought I had SP but the original one thought it was PR (a rare type) and I don't think one has relapses with SP. I've been in the bed more in the past year than I ever have and the house has become cluttered and needs dusting. My plans are to get rid of the clutter as soon as I feel up to it and possibly hire some help soon.

Update: I got up this morning feeling better than I have in years. Still not up to physical work....I'm just doing paperwork today but filing away 5 years of income tax records will be tops on the agenda.....Just hoping it will last until I get all the house de-cluttered and wait for the cleaning crew to get it all clean and ready for the Christmas season.

Gabriella

[Virginia]

Gabriella, glad to hear you are feeling better today.

As for having relapses when you are SP - I definitely think that happens. I am SP and I do have relapses. Just days when I can't do things as well or I am more fatigued or I have more spasticity especially in legs. I sometime go through spells when it last quite awhile and I am constantly concerned that it has become permanent.

[Gabriella7]

Old Saying...A rose....

A rose by any other name still smells the same. I guess it doesn't matter what they call IT......IT is still is a MonSter of a disease. I hope this feeling lasts and lasts. My feet and legs still feel normal. I wish it could have helped with the bladder/bowel issues but I guess it is not to be. Unless the good effects keep coming and coming. I'll be back to post if they do.

I'm really tired because I am still taking my husband to doctors appointments and fighting with office staff to get him in. He has to see a gastroenterologist on the 10th for evaluation concerning his swallowing problem. At first they wanted him to wait for an appointment on the 29th at 9am after me telling the other doctors nurse who scheduled the appointment... we needed an afternoon appointment.

There's no way we can get to Atlanta in the morning rush hour traffic. I had to get mad and let them know that he might not be around on the 29th as he is having a severe swallowing problem and is choking on water! After telling me several times that the 29th was the doctor's first available appointment....she found one on the 10th at 4pm.!

Gabriella

[SalpalSally]

That is probably your new found strength, Gabriella. You need it, to tke care of DH and other important things. He works in mysterious ways.

I hope your improvements just keep coming..

[Gabriella7]

HE does work

Yes Sal, HE does work in mysterious ways. An old friend of my husbands from Canada is in town and coming to visit on Monday. Now if HE could help me get the house in order prior to Monday it would be a miracle. But, if it doesn't work out that it gets done I'm sure the friend will understand as he knows I have MS and Canada has a lot more of it than here in the South.

Sorry to report that the "MonSter hug" is back!

Gabriella

[Gabriella7]

Latest

Well, today the hug is gone again. This is certainly mysterious. My feet and legs were paralized last night and I was depressed about the turn of events but this morning I am having feelings again in them. I just need to take it one day at a time, hope for the best and trust HIM who is the great physician.

Gabriella

[Gabriella7]

Ear Infection Returns

After the fact of injecting Acthar Gel my ear/sinus infection that I thought had cleared up with antibiotics has returned with a vengence. This is one of the side effects of the medicine. Any infection might get stirred up again. All in all I doubt that I will inject this again.

The benefits have been few and far between while the risks of a return of an infection that I thought was all gone is real and painful. Sorry the search for a treatment still goes on. I'll see my neuro next week and see what he thinks.

Gabriella

[Gary]

I have had the same problems with steroids. It has caused sepsis twice. But there are times when you get the "hug" and can hardly breath that you would do just about anything to make it go away.

[Gabriella7]

Caution

Information on the Acthar web site states..."Caution should be used when prescribing Acthar to patients with diabetes or myasthenia gravis." Now I know why! Too bad the doctors don't have enough time to read all the warnings. It made my myasthenia gravis symptoms increase with weakness but didn't raise my blood sugar as much as the steroids. I had my 3 month appointment with neuro yesterday and he is not going to recommend I take Acthar again and said the effects of the 5 day treatment should last for another 3-6 months. Oh joy! I hope all the effects are good ones....

He said he wanted me to decide if I wanted to be on Methotrexate, Imuran, or Cellcept. He told me I could research them on the internet and make my decision as they treat both the MS and MG. Looks like I am a DIY patient! I'm ok with that as my last neuro I fired just wanted to be a dictator so I called him Dr. Menegle. Gary, sorry you have the double whammy of diabetes as it makes treating MS so much harder.

Blessings,
Gabriella