Hi Tim! Update since this posting of several months back. I went into another Lupus flare right after I took my mother in from having surgery. But still not as bad as I was last spring. Walking has improved and hands are working but have days where my feet and hands burn. Not like last year though. The lupus flares come and go and I am fighting a flare now but the prednisone is working. I did manage to lose 20 pounds though and am getting better sleep hit or miss a night or two but not like it was last year. CODP though is not as good as I would like it to be. Darn weather down here has been getting that acting up. I still have my good days and bad ones. Compared to last year and this year though. I am at least 50 percent better. Getting more exercise too and force myself to do that.
I still have some recovery but hope this summer when Andy get’s our pool up that I will get another 10 or 20 percent more better! Old saying goes One Day At A Time One Step At A Time!
My feet though still bother me. If I stand on them too long them I am in pain all night. But trying to solve that issue now! Maybe another year I will be back to my old self again! Am doing more this year than I did last summer so thats a huge plus! Hope you are doing well! Been reading your postings and watching your progress! Are you still with Mark Brown?
Hi Tim! Sorry to hear your last treatment was with a bad reaction! Hope that in time they get easier and less stressful! And hope you are seeing a big improvement on getting well! Wished I could answer that question! Might be the person itself and the way their immune system reacts to the IVIG brands. Wishing you my best and hope to see you well again!
Hi Tim! It took me two years of taking the steroids before I started seeing good results. The doctor is right about the damage that got done. Will take time to reverse what happened to you. But glad you told the doctor what was going on and he is aware of it.
I remember when I first got diagnosed with Lupus and they started me on all those meds for it! I was so used to going to doctors for ear infections and colds and the meds alway’s cleared me up and made me well again almost instantly.
Then Lupus came along and I started taking the meds. And for some reason the meds were making me all doped up but I really didn’t see a difference in most of the meds except for the prednisone. The #1 drug for Lupus is Plaquinel and is supposed to help the rash and joint pain along with lung pain. Well it wasn’t working instantly and I told the doctor that drug wasn’t working. She then tells me it take Plaquinel for it to get into your system a good 6 months. WHAT??? 6 Months! Funny because 6 months later one night I was in bed and suddenly noticed no joint pain. It was instant! LOL! I was getting mad because I felt I was taking a pill here that just was not doing nothing and my doctor kept insisting I take it! I felt I was wasting $90.00 a month. I was in a wheel chair Tim when I got diagnosed and placed on prednisone. It took me two years before I was able to actually to walk again without help. Nerves in our bodies take alot longer to heal than other wounds. But glad Dr. Brown is watching and listening. You have a good doctor! But our bodies on the other hand. We all have something that has to be treated in different ways. Some things work while others don’t.
Time will tell! Just hope the prednisone does eventually help! Hugs
When I went to the doctors this last week I turned my cell phone off and didn’t realize it was turned off until today. Am just now getting your message! LOL! I’m sorry! It’s been a very crazy hectic week. And Linda here is getting doofy brained.
That prednisone with you just starting out on it. Really hasn’t been in your system that long. It takes a while before you start getting hunger binges! The side effects vary from person to person. Some get hunger binges.. ME 😀
While others get nervous and moody. And then some folks do very well on it and don’t see much going on! Usually after about a month of being on the drug is when you will start seeing things happen like the moon face and weight gain. Don’t over push yourself with alot of exercise. You don’t want to have a relaspe and need this medication to get in your system.
Tim! It’s going to be hard to tell you that it won’t be long before you get better. You may be seeing some results but it’s not going to cure you. Only helping you in hopes to go into remission! I started on Prednisone in 1993. And I at that time was wheel chair bound and almost bedridden. It took me two years to get out of that wheel chair and start walking on my own again. I have seen off the pred and back on it. Off the pred and back on it again.
I saw 1 remission that lasted almost 4 years. Then I got sick again and no back on the drug. Depending on the damage and inflammation you have. It could take a few months or a few years. You will be able to tell in about a month if the drug is starting to help. But it depends on each person. Some are slow healers while others get well quickly.
You will probably end up seeing those doses of prednisone off and on for quite some time. And you may still have flares every now and then having to increase the dosage again. But you on a start and time will tell! You got to think here that you have gone 5 years of damage before finally getting a diagnoses. And those 5 years did some damage on the nerves. Nerves have to regenerate in order to heal back. The main thing is keeping this inflammation down and getting those nerves that got damaged to regenerate and come back to life. Each day you may see a difference and as long as you see improvements, then that is good. If you start feeling bad again you let Dr. Brown know ASAP! I call CIDP.. a form of MS. For it can mimic MS at times. The prednisone might help you out and you get well again and never have any more problems but then too, you may still see a few flares having to increase the doses. The one best doctor we have is our own bodies. Listen to your body and keep listening. Any changes that feel abnormal let the doctor know.
I know a man that too saw Dr. Brown and he was wheel chair bound like me. They placed him on treatment and a year later he was walking with a cane and down to 1 mgs of prednisone per day. He did great! Me! Because of the disease I have which tacked on more diseases.. 😀 I will see Prednisone the rest of my life! I have been on high doses tapering down to low doses back to high again. I will never see me getting off the drug. They might lower it but that is far as they will be able to go with me. So each patient is going to vary!
Sounds like right now, you are doing okay with it. Still watch your blood pressure everyday and sugar. Good luck my friend! So glad you are now getting treatment and I hope it makes you all well again! Hugs
Hi Tim! I think alot of it has to do with insurance too about treatments. Some people can take the prednisone and it will help them and others won’t respond so they take the next step. Insurance companies have alot of say so in the matters of treatment. Which I think is bad! The doctors have their hands tied too with these insurance companies keeping many from doing what they would like to do in the first place!
Hi Tim! I think that is one of the best test for detecting growth and cancer masses on the thyroid. He is going to see if that nodule has done any increase in size. If it has then a biopsy would then be needed. I would then get referred to a Endrocine doctor.
Raining here this morning making me sleepy. Might just get under the covers this morning and grab a few more hours of sleep. Sure need it too! 😀
I have a feeling Neurontin and Ultram ER are going to be what helps you. I switched back to the drug myself and increased my dose. So far it is helping but still trying to get to the higher dose. I am seeing some relief from it. Try it out and in two weeks if you feel you need an increase call your doctor and see if he will increase it for you. They always start out at low doses because your body has to adapt to it. But I think this drug may help better for you! I had a friend that had a toxic liver and she could not take NSAID’s either. She got placed on Ultram and Neurontin and is helped her out. A Lupus buddy of mine. Miss that girl! She passed away 3 years ago from her lupus. Had CNS Lupus and went into a coma and died. She was far more worse then I was! She had that disease bad! Really bad! Hope that neurontin helps! Good luck my friend! Good luck!
Hi Tim! That Ultram ER is pretty good but was too strong for me. Neurontin is usually started out at 300mgs two or three times a day. Meaning you get 900mgs to start out with.
It does make you feel funny in the head at first.. made me feel like I was high but after a few weeks it begins to settle down and you get clearer. Me being hypersensitive to meds I have to start low doses.
The thing with Neurontin though is that your body can get up to a very high dose. But you are gradually tapering up to the dosage. Most people the first time they take it will notice a difference right away.
They will probably start you at the 300 3 times a day. That Buspar started out okay but my dose is way to low. So I had to go back on Neurontin. Tried all the others and they did not work for me and keep going back to neurontin.
Buspar is an anti-depressant but can be used for neuropathy. Alot of anti-depressants can also effect the liver profiles too.
The good thing with Neurontin is it does take the ease away. And that Ultram ER is good for pain. I think I would take both especially at bedtime. That way you are getting good relief on sleeping at night. I would not give up the Ultram ER. That is an inflammatory where neurontin is not. So you would have both helping the inflammation of the nerves.
Stop the Ultram temporarily and try the Neurontin having the doctor increase your dosage until the pain stops. I am up to 5 pills now. And trying to get my body used to it. But you may do different than me. But keep the Ultram ER for bad nights or bad days.
Neurontin for me is much stronger than that Lyrica. I took that too and it did nothing for me! Still had pain all day with Lyrica.
I too would go online and research neurontin to see if it can cause liver problems. Most anti-depressants used for nerve damage can cause higher liver profiles. Neurontin is a seizure medication but is used alot for pain and nerve damage. And the thing about that drug is it can be taken in high doses. All the others have to be taken by limit. Neurontin also has a limit but the dose can be much higher. Meaning it can be increased for pain. Giving you a better chance of getting some pain relief!
Unfortunately, you have problems with high liver profiles and that is going to limit you alot but there is something out there you still can take. I would try the Neurontin and see what happens. But I still would not give up the Ultram ER. That way you have both just in case you need it!
Hope this helps!
Hi Tim! I also take the Clonopin and was on Zanax but low dose Zanax. The clonopin helps with sleeping but only if I’m not is severe pain. The drug on me though will last 4 hours and then I’m wide awake again with numbness and tingling.
I’m on my third pill since yesterday and it seems to be helping. I get a tiny bit woozy at first but it only last about an hour and then I start feeling relief!
This morning after feeling horrible for 3 days. I woke up, and got dressed. Did 1 load of laundry and washed dishes and I vacumned my house! 😀
That has been a struggle doing for a while now only doing two small rooms at a time. Half the house 1 week and half the house the next week. And even that has been hard.
But this morning that vacumn was running! I like it alot better than those other drugs!
Hi Tim! Well lets just say you actually two good words on Dr. Brown! One of his patients referred me and they told me good things about him. Funny because while I was getting sicker in PA with Lupus back then, I had seen 4 different Neurologist, and over 5 different regular doctors, along with several hospital stays. Nobody could give me any answers back then. Or would not tell me anything.
The patients name was Mr. Cherry. He was an older man and started getting bad neuropathy problems. Got to the point he landed in a wheelchair. Was seeing doctors and no answers. He was a rare case to diagnose. Mark Brown saw him and started testing and knew what to look for and found it. Mr. Cherry has a benign tumor after a Bone scan on a bone, can’t remember where it was but he had to get Plasmaphersis treatment with prednisone. It took a whole year of recovery and he could not drive anymore. Was extremely ill. One year later, he was driving again and walking with a cane.
They know I have CIDP but are trying to rule out the Heriditary Neuropathy also.
Some neuropathies and there are hundreds can’t be treated because of a genetic factor, but they can at least give you something to ease the crunch. I was a rare breed and have been from day one. I have Systemic Lupus but don’t give off the classical labs like many other’s do. A Rare form of CIDP can happen and they think that is my case. But because of two doctor’s here in NC messing me up. They now have to rule things out first.
I miss Mark Brown. The man sure know’s his stuff. I would have never gotten diagnosed and probably died back then. That man saved my life! When he did find out what was wrong with me, they started treatment. But I was in really bad shape when he first saw me. I too had landed in the wheel chair and was bedridden most of the time. When they started the pulse steroids on me! Woo hoo! I remember jumping up in the hospital bed and telling my family, I feel better already! 😀
Get to NC and see one fruitloop and have normal labs. So he wants to take me off prednisone and say I no longer have Lupus. Just got a new biopsy report in July reading Lupus. Told that doctor too that I was a rare breed and my labs would come out normal over half the time. Instead of listening to me, he ignored me. Now I have that rare form of CIDP again like I did before. Thank goodness I have some doctors finally listening. But hate that I have to be tested all over again being ruled out for some things I have already been ruled out on years ago!
Have a great day and it is a pleasure meeting you.