Hi Jim
Hi Jim! I wished I could get off the medications. And believe me I have tried and after a few months ended up getting sicker again or landed in the hospital or ER!
I have several things going on with me. Severa Asthma with CODP mixed, Osteosporsis, A Pernious Anemia, Vitamin D Difeincy, CIDP, Lupus, Hiatial Hernia and Diverticulitis and then no Thyroid along with High Cholesterol.
My drug list each day:
1. B-12 Injections Weekly and the Sublingual Tablets 1000 mgs per day 1 time a day
for A Pernious Anemia (Without it I will die)
2. Vitamin D 100IUs 1 time a day (Vitamin D Difiency)
3. One A Day Multi Vitamins 1 Tablet a Day
4. Ibuprophen 800mgs 3 times a day (Lupus Medication)
5. Plaquinel 200mgs 2 times a day (Lupus Medication)
6. Evista 1 tablet a day for (Osteosporsis)
7. Prednisone 40mgs right now but was at 10 4-10mgs tablets per day(Lupus & CIDP)
8. Dicyclomine 10mgs After every meal. 3 times per day for (Diverticulitis caused by Lupus)
9. Metoclopram 10mgs 4 times a day (Hiatial Hernia caused by Lupus)
10. Lovastatin 20mgs 1 Time a Day (High Cholesterol)
11. Clonazapam 1mg 2 times a day (Anxiety but using it for sleeping due to Lupus and the CIDP)
12. Gabapentin 300mgs 6 times a day ( Nerve Damage Pain CIDP)
13. Tylenol with Codiene Only to be taken as needed which I barely take unless I can’t stand it) Lupus Migraines
14. Abuterol Sulfate Nebulizer Medication 4 Vials a Day (For Asthma)
15. Abuterol Sulfate Inhaler 2 Puffs 2 times a day (Asthma)
16. Symbicort Asthma Inhaler 2 Puffs 2 times a Day (Asthma)
17. Synthroid ( Thyroid)
18. Lexapro (For Anxiety but only take that when needed)
This is what I am supposed to take every single day! Before I got sick and was rather healthy I only took regular tylenol and that was rarely. When Lupus struck me in the late 80’s and then got diagnosed in 1993. I went from regular tylenol to all these medications! 🙁 I went into remission for two years and stopped taking everything. Boy was that great being in remission. Then the Lupus came back and so did CIDP. There is no cure for my disease but it can be treated. Some Lupies though end up being stubborn cases and never really get better. I have the Systemic Form which attacks my organs. Any part of the body it can attack. It attacks the Kidney’s Heart and Lungs, Nervous System and even the Bowels! Without the stomach meds, I am in my bathroom at least 4 times a week with vomiting or upset stomachs. Very painful disease. Joint pain, Low Grade Fevers, Migraines, Lung Pain, Vomiting, Upset Stomachs and then having CIDP with it just don’t mix to well!
I don’t wish my disease on any human being out there! That is one reason I am praying they start doing Stem Cell research and hope the Insurance companies start paying for treatment. I will never see that day! I am very disabled! And when I have a good day and can get out of my house I am like a bird that has been in prison for several months that suddenly wants to go wild and free! Not a drug addict though and can quit anytime I feel like it. Just have no choice but to take these meds. Many years ago Lupus patients only had a 5 year lifespan. Because of these medications I have been able to live 20 years. These meds have given me 20 years of extra life that I would not have had otherwise. The disease can still kill though and I have lost quite a few friends with it. Most of them were in their early 50’s and some were younger. Just alot goes on with this disease. Never know what to expect from one minute to another. I have been a fighter though! Really have and still trying to fight it! Just every now and then especially this past year seeing so many doctors and surgeries and needles. You start to get tired of putting up with it! That last friend that died from it just went to sleep one night and never woke back up. Pulmonary Edema! I just deal with it and keep on trying to live my life the best I can! Doing small projects or reading books, enjoying my container garden, enjoying looking at my flowers and best of all giving all my cats a good decent home. I have several babies that need me and as long as I am living I plan to care for them. They have shown me love that not even my own family can provide. Except my husband! He too enjoys the cats and they are our children. Believe me! I have talked to my pharmacist many times over. Just wished I didn’t have to take all these meds!
Hugs
Linda H
Hi Jim!
Hi Jim! That is what one of my hands is doing. Getting a clawed look! I never knew what to call it until you mentioned it. My left hand looks okay but my right hand fingers started drawing in so the doctor placed me in the braces to wear actually whenever I want to wear them. I wear them at bedtime because they relieve the pain for me. One finger is totally ruined and won’t straighten out at all. I also have stocking glove feet whatever that is. Noticed when I read the Neuro report they mentioned I had stocking gloved feet. My body has changed so much and I see the changes but didn’t know what they called it! LOL! I still have alot to learn! It seems like I alway’s have something new too right when I think things are going great something else pops up. I guess my old age is just catching up with me huh? LOL! Hugs
Linda H
Hi Jim!
And here I was in the pharmacy today and did not even know about this day! Great learning experience! Thank-you for sharing!
Hugs
Linda H
Hi Jim
Hi Jim! You sure know how to make a person laugh every morning! Those kittens were so cute! And the car with the mule! LOL! Thanks for making my day!
Linda
Hi Jim!
Hi Jim! If you are reading this posting, I just want to say that I will be praying for Carolyn and you both and hope to see her recover quickly and get well soon! You both are in my thoughts and I miss you in here! Hugs
Linda H
Hi Jim!
Hi Jim! Still saying prayers and hope Carolyn gets well soon! So sorry to hear you are going through so much right now! I truely feel for you! Hugs
Linda H
Hi Jim!
Hi Jim! Some doctors have a way of getting in touch with the Pharmaceutical companies and they give medications out for free to those that apply. Contact your doctor to see if he can do this for you. Also contact the pharmaceutical company where your meds come from. If you have the proper forms filled out and send everything they request they will send you meds at no charge. You can call your pharmacy and find out the Pharmacuetical company and then get your doctor to write a script.
Certainly not fair to any of us dealing with things right now! Try this out and see what happens. It might just work.
My cousin is having problems with his meds and this is what he did and now gets his meds for free. They go by income and dependents. Good luck my friend! Good luck!
Hugs
Linda H
Hi Jim
Hi Jim! Hope you are having a much brighter day today and am feeling okay! Still saying those prayers for you! Hugs
Hi Jim
Hi Jim! Bless your heart! You too have been through so much! I will pray very hard for you and me both and hopefully our Mother Teresa will answer both of our prayers.
Please keep us posted about your condition. The more of us that pray for you, hopefully a true miracle will happen in your favor!
Hi Jim!
Hi Jim! Depending on a person’s disease, steriods are used for many many things. In some diseases it helps people taking them. But some diseases it makes the disease process worse. As Jan said when diagnosed with GBS steroids are not the norm treatment for GBS but.. CIDP on the other hand steroids are used alot in treatment.
Because of your heart transplant they are using steroids to keep the heart from rejecting itself in your body. So it is very important for your problem right now that you take the steroids. Even people with poison ivy in bad cases are given a medrol pack of steroids.
Steroids can save a persons life, but then high doses of steroids and long term use can cause sides effects just like any other drug. Me being a long term user of the drug for several years. I can no longer get off the steroids. So I have to stay on a low dosage.
Long term steroid use can cause High Blood Pressure, Osteosporsis, Tendency to be more prone to Infections, Obesity and a few other problems. But it’s just like any other drug out there. NSAID’s like Ibuprophen can cause the stomach lining to get weak if taken to long. Causing bleeding problems, stomach ulcers etc.
For what is going on with you, it’s the proper treatment plan for you. Without it, your heart could reject itself causing you more problems. So for you it is considered a life threatening situation. Kidney transplant patients are also given steriods for the same reason.
But long term can cause problems in later years. Mostly bone problems like Osteosporsis, Necrosis of a bone, Diabetes, High blood pressure etc. Does not mean you will get these problems but it might happen. That is why you get tested for other things while being on the drug in later years.
Hope this helped.
Hi Jim
Hi Jim! Welcome to the site! So sad to hear what you went through and do hope you get better soon. Sounds like you had a rough time there. But very glad to see that things are turning around some. Wishing you a fast recovery and hope to see you on your feet soon! Cyber hugs