medications

[Guest guest]

Kat:

My husband is one of the ones who was diagnosed in life with MSA but

turned out on autopsy to have DLBD. He responded very well to Aricept as I

have said before, but whenever I commented on this to his Neurologist, she

always added that his improved mental ability was also because we were able

to keep his BP very high most of the time. I do know that when it was low, he

was much harder to communicate with and that sometimes I made him lie down

(that raised his BP VERY high) so we could talk.

Barbara

[Guest guest]

Mr. Werre,

You have always been my strong hold. I really appreciate and value

your thoughts.

He is having visions, and he doesn't know when he is in his own

house. But he has called me to find him, so he can find my cell

phone number.

My Step-Mother is really having a hard time with this. He doesn't

even know who she is. And it is hard hearing her cry on the phone.

I feel like I have to be the strong one, even though I miss my Father

too. I know that it isn't as hard for me as it is for her.

She seems to think that the blood pressure thing isn't an issue. But

I think it is. He need the blood to feed his brain. And if it is

low then it caused visions. We go out to eat and I salt his food,

hoping that it gives him blood pressure.

We have also notice that he forgets to eat lunch when he is home

alone. Some days are better, he remembers to eat, but mostly he

doesn't. I suggested a 'Meals-on-Wheels' plan.

He doesn't tremor or shake. That is why I think that it is LBD.

I don't know what else to say, Please if you could ask me questions

then I would know better what to ask. (doesn't that sound dumb?)

Thank you group, Much Love, Kat

[Guest guest]

Kat,

Barb 's husband Ken responded well with his forgetfulness with

Aricept which is an Altzheimer's medicine. Why don't you tell the

doctor about the forgetfulness and tell him you heard Aricept may help.

How low does his blood pressure fall? We bought a BP measuring device

and kept records of my wife's BP then showed the doctor what is was on

average.

The Meals-on-Wheels plan sounds good to me.

Take care, Bill Werre

rskamaro wrote:

>Mr. Werre,

>

>You have always been my strong hold. I really appreciate and value

>your thoughts.

>

>He is having visions, and he doesn't know when he is in his own

>house. But he has called me to find him, so he can find my cell

>phone number.

>

>My Step-Mother is really having a hard time with this. He doesn't

>even know who she is. And it is hard hearing her cry on the phone.

>I feel like I have to be the strong one, even though I miss my Father

>too. I know that it isn't as hard for me as it is for her.

>

>She seems to think that the blood pressure thing isn't an issue. But

>I think it is. He need the blood to feed his brain. And if it is

>low then it caused visions. We go out to eat and I salt his food,

>hoping that it gives him blood pressure.

>

>We have also notice that he forgets to eat lunch when he is home

>alone. Some days are better, he remembers to eat, but mostly he

>doesn't. I suggested a 'Meals-on-Wheels' plan.

>

>He doesn't tremor or shake. That is why I think that it is LBD.

>

>I don't know what else to say, Please if you could ask me questions

>then I would know better what to ask. (doesn't that sound dumb?)

>

>Thank you group, Much Love, Kat

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Medication is chemo (chemical) therapy. This said, everything we do is technically chemotherapy.

With NS, or systemic sarcoidosis-- prednisone is like putting a bandaid on a huge wound. It is great for that emergent situation where we may go in such flare that we have to have the "burst- high dose IV solu-medrol" but for long term-- it's not going to do much. And if you don't get on something else- then you have the hardening of the arteries, the mood issues, the diabetes along with the increased weight gain.

There are several catagories of meds that are helpful. It seems that to get some control-- it does require that we treat multiple issues-- with combinations of meds.

The anti-inflammatories help with the systemic inflammation.

ANALGESICS are for pain. These include:

Acetaminophen, Codeine, Hydrocodone; Morphine Sulfate, Oxycodone, Darvone, Percocet, Ultram, Ultracet. Fentanyl patches, and Methadone.

ANALGESICS can cause psychological and physical dependence. But if used as directed, and you don't start increasing your dosage on your own-- that issue can be handled. Do not stop taking pain meds abruptly-- you will have rebound pain if you do so.

NSAIDS are Non-steroidal Anti-inflammatory Drugs. These include:

Diclofenac potassium (Cataflam) and Diclofenac sodium (Voltaren). Diflunisal (Dolobid); Etodolac (Lodine); Fenoprofen calcium (Nalfon); Fluribioprofen (Ansaid); Ibuprofen (Motrin) (Advil and Motrin IB and Nuprin); Indomethacin (Indocin); Ketoprofen (Orudis and Oruvail); Meclofenamate Sodium (Meclomen; Meloxican (Mobic); Nabumetone (Relafen); Naproxen (Naprosyn and Naprelan) (Anaprox and Aleve); Oxaprozin (Daypro); Piroxican(Feldene); Sulindac (Clinoril); and Tolmetin sodium (Tolectin).

NSAIDS carry a higher risk of GI problems-- and should be taken with food. You can control the gi problems by taking an antacid along with the NSAIDS.

DMARDS are Disease Modifying AntiRhuematic Drugs. These include:

Azathioprine (Imuran); Chlorambucil (Leukeran); Cyclophosphamide (Cytoxan); Cyclosporine (Neoral and Restasis drops); Hydroxychloroquine Sulfate(Plaquenil); Leflunomide (Arava); Methotrexate (Rheumatrex, Trexall); Minocycline (Minocin).

These are immunosupressants and some originally set up to use for transplant anti-rejection. The uses now include early onset usage for inflammatory diseases that threaten to destroy joints and cartlidge. They do take time to build up to an effective level, and so most often you need to take them with an NSAID and ANALGESIC.

BRMS are Biological Response Modifiers. These are:

TNF-inhibitors: Adalimub (Humira); Etanercept (Enbrel); Infliximab (Remicade). Also there is an IL-1 Inhibitor: Anakinra (Kineret).

TNF inhibitors stop the production of the TNF-a and TNF-b. This is a protein (cytokins) in our blood that is supposed to clean out the white blood cells after they've done their job. Our bodies don't clean out, but build layer on layer to form granulomas. By suppressing this-- it stops the inflammation reaction of the white cells.

Kineret works on an Interleukin that may have some effect on increasing systemic inflammations.

They do carry a higher risk of infection and lymphoma. It is uncertaing whether BRMs increase lymphoma risk, or if by the immune system being so depressed, that you become more susceptible. CBC and Liver Function tests are needed monthly.

CORTISTEROIDS are fast acting anti-inflammatories. They are the oldest and do bring down inflammation fast. The down side is that when we get off them, the inflammation generally comes back, and because if we've been on them long term-- we have all the other wonderful side effects.

Your body makes about 15mg of cortisol daily. When you supplement with 60 or 80mg daily, or every other day; you stop producing your own cortisol. Your body literally has to relearn to make this hormone, and without it- pain signals, inflammation, heartbeat, body temperature are all effected.

When used in conjunction with a DMARD or BRM you can generally use a lower dose steroid. This spares the adrenals and hopefully you don't develop diabetes.

These include:

Dexamethasone (Decadron); Hydrocortisone (Cortef, Hydrocortone); Methyprednisolone (Medrol); Prednisolone (Prelone); Prednisone.

FIBROMYALGIA DRUGS. These include:

Amitriptyline hydrochloride (Elavil, Endep); Cyclobenzaprine (Cycloflex, Flexeril); Duloxetine (Cymbalta); Fluoxetine (Prozac); Tramadol (Ultram, Ultracet).

Many times we end up needing an anti-depressant to balance out the brain chemicals. When you are in pain, your sleep cycles are disrupted. When your sleep is disrupted, your body can't heal, and you end up in more pain. The seratonin and norepinephrine levels in the brain stop functioning as they should and this has to be rebalanced, just as if you had thyroid disease and needed to take thyroid medicine.

For many of us, we end up with our hormones screwed up due to the pituatary or hypothalmus involvement, or the long-term use of steroids. So it is most important that all these issues are addressed. So, if your MD insists on you needing an anti-depressant, it can be a good place to start.

Do ask-- is this for depression or for the fact that I'm in pain and not sleeping, and you think that my brain chemistry is out of sync.

If the MD thinks that you are just depressed, and that if this issue alone is what is doing a number on you- let them know that yeah, you may be depressed, but all this other stuff is happening too. Depression is SECONDARY TO YOUR SARCOIDOSIS ISSUES.

The above information is taken for the ARTHRITIS TODAY MAGAZINE.

You can go to www.arthritis.org and get a more complete account of each drug---- and print this out from there. It explains in detail the side effects, risks, and dosages. I share this with you so that you have an idea of what is currently being used.

I did remove the drugs that I've not seen mentioned in any articles or by any of our members.

I do hpe this helps,

Tracie

NS Co-owner/moderator