Venlafaxine HCL 75mg

General
1

At my request, my neurologist prescribed me Venlafaxine. I have taken 75mg for the first week and now up to the recommended 150mg. I saw a change withing 2 days when my current flare came to almost an abrupt stop. Since, I have seen an amazing improvement. My feet are 75-80% better and my hands about 50-60%. I am cautiously optimistic.

I was able to go for a 4 mile hike this past Friday and Saturday. It's the first time I've been able to run in 15 months. I feel like I'm getting a crucial part of my life back.

From others' experiences, has this worked for you? how long? Were you diagnosed with primary or secondary? Do you combine Venlafaxine with other meds?

Has anyone looked into mold as a possible cause? Watching Dr. Oz today.

Full disclosure, I also started taking hydrocortisone as my cortisol level was a little low, baby aspirin, and B12. Same time as Venlafaxine.
2

That is great news! It's inspiring to hear about treatment success stories! For those unfamiliar, Venlafaxine is sold under the brand name Effexor and is an antidepressant of the serotonin-norepinephrine reuptake inhibitor (SNRI) class.

3

Venlafaxine helps my flares too :) Glad to hear it's helping you also!

4

Sorry to be a party-pooper, but I've been on 300 mg of generic Effexor for quite a few years ... while my EM isn't as bad as most of those here, this drug sure didn't stop either my hormonal hot flashes nor my EM events. In order to change anti-depressants to one that helped my insomnia about 10 years ago, I'm about to start weaning off Effexor. It's apparently one of the hardest a/d to get off of -- and I did it with Prozac, and that was no picnic.

I've had several serious exposures to mold, and multiple lower-level exposures throughout my life (60 years now). My most recent mold exposures made me very sick, including an awful set of G/I symptoms that in the first case, lasted more than 6 weeks. I see a holistic M.D. and had been planning for more than a year to start on some special I.V. treatments that have greatly helped many people recover from damage to the fatty acids surrounding our blood cells thought to result from repeated exposures to toxins, molds, and other pathogens.

After several delays due to family circumstances, I saw my doctor 10 days ago, to review the treatment and get scheduled. I mentioned that I'd had additional mold exposures since my original testing, so she had me do an ozonated blood treatment (by I.V.) plus a "Myer's Cocktail" containing a high concentration of vitamin C, magnesium, among others. Then I had my first I.V. of phosphatydylcholine plus glutathione, methylated folic acid (I have the genetic mutation that prevents proper metabolizing of folic acid, which leads to high homocysteine, elevating the risk for stroke, heart attack, cancers, etc.).

This is definitely a case of the little toe bone being connected to the elbow ... complicated and complex, and this is an expensive process -- it's pretty much my last big campaign to regain my health, and it's only because I finally got a lump-sum settlement from my personal disability insurance policy after monthly benefits for more than 10 years. The most interesting development so far is that my EM quieted for most of the week since my first infusion!

I had my second today ... don't know how many I will ultimately have -- I'll be retested at some point (and at an additional expense). I am optimistic that this treatment might resolve or at least lessen my EM, reduce or eliminate my insomnia, and reduce or eliminate my mold-related symptoms.

To help all that along, I also just purchased an oxygen concentrator machine. I've got a history of anaerobic bacterial infections, and breathing better and breathing higher concentrations of oxygen have been proven effective. I did a lot of research, talked to more than one doctor, and finally took the plunge. My machine arrived today just before I left for my IV treatment. I'll let you all know how it goes.

I realize that what I'm doing isn't possible financially for everyone. As I said, I wouldn't have been able to afford most of it either if not for having received a large insurance settlement -- which was unexpected. If I get more of my life back, I will be thrilled ... if not, maybe I'll more easily accept that this is as good as it gets.

If you are interested in learning more about anything I've mentioned, simply do some word searches online ... that's how I got my info, and I'm not really able to provide numerous links -- in part, because I tend to follow one to another, and eventually I find something especially worthwhile ... you can, too! I will post again about how my treatments and oxygen impact my EM, for sure.

1 Like
5

My doctor is thinking of trying a serotonin reuptake inhibitor (SSRI). I am a bit wary of trying it as I seem to have bad reactions to a lot of drugs. I am on buprenorphine for my RA and was given first Gabapentin and then Pregabalin. With both of these I had awful things going on. With the Gabapentin I was in a coma for 2 hours! Then with the Pregabalin on a very low dose on 50 mg I had awful side effects, I had double vision could hardly see and my balance was awful I kept falling etc. So, I am a bit worried about trying anything new as I live on my own so if anything should go wrong nobody would know. I have read about drug interactions with buprenorphine and think this was the problem with the Gabapentin and Pregabalin. Does anybody know if serotonin reuptake inhibitors like Velafaxine is have the same sort of drug interaction with buprenorphine?

6

sheltielife,

Why do you take a narcotic for RA and not one of the more commonly prescribed DMARD's, such as methotrexate or humira? How was your RA diagnosed?



sheltielife said:

My doctor is thinking of trying a serotonin reuptake inhibitor (SSRI). I am a bit wary of trying it as I seem to have bad reactions to a lot of drugs. I am on buprenorphine for my RA and was given first Gabapentin and then Pregabalin. With both of these I had awful things going on. With the Gabapentin I was in a coma for 2 hours! Then with the Pregabalin on a very low dose on 50 mg I had awful side effects, I had double vision could hardly see and my balance was awful I kept falling etc. So, I am a bit worried about trying anything new as I live on my own so if anything should go wrong nobody would know. I have read about drug interactions with buprenorphine and think this was the problem with the Gabapentin and Pregabalin. Does anybody know if serotonin reuptake inhibitors like Velafaxine is have the same sort of drug interaction with buprenorphine?

7

Sorry, I should have said the narcotic wasn't for RA it was for what they say is peripheral neuropathy, which I may or may not have! That is the confusion, as I have a few illnesses that can cause various things and one of them is EM. I am actually on sulfasalazine 3gms a day for my RA, but I also have kidney and liver problems and wonder if these can be causing it. I get a bit mixed up with these forums sometimes, not that I am computer illiterate it's because I feel so bad most days that I can't concentrate at times. I have also been told I have thick blood another thing that can cause EM. The doctors don't seem to have a clue about anything and just seem to want to give me pills whether they are going to be good or bad for me. The only thing I have a proper diagnosis of is RA, which was diagnosed by blood tests etc. quite a few years ago. I could cope with the joint pain and stiffness, but it's what I think is EM is causing me the most problems. I am now confined to a wheelchair as I can't walk due to the pain and the only relief I get is using a bowl of cold water with my feet in freezer bags, as I have ulcers on my feet so can't get them wet. Even then they never get perfect, I constantly have burning pain and they are very red, on rare occasions my feet go blue. I hope this helps solve the confusion?

8

In my opinion, I would think that it was the hydrocortisone that helped because steroids make autoimmune stuff better for some reason. Hopefully not though.

I've never heard of them giving hydrocortisone for low levels, so that's interesting to know, although mine was fine.

9

That is another interesting thing hayley3. Last May I had my left adrenal gland removed as I had Cushing's Syndrome. My cortisol level was very high prior to that. It's since I had my op that my EM has gone a lot worse, so maybe I would be better with steroids than the Sulfasalazine or even as well as if that is possible

10

I tried Velafaxine several times and it gave me a terrible headache. I am taking Zoloft (sertraline) now. No side effects, but it only helps a little for my EM.

Pat in NH

sheltielife said:

My doctor is thinking of trying a serotonin reuptake inhibitor (SSRI). I am a bit wary of trying it as I seem to have bad reactions to a lot of drugs. I am on buprenorphine for my RA and was given first Gabapentin and then Pregabalin. With both of these I had awful things going on. With the Gabapentin I was in a coma for 2 hours! Then with the Pregabalin on a very low dose on 50 mg I had awful side effects, I had double vision could hardly see and my balance was awful I kept falling etc. So, I am a bit worried about trying anything new as I live on my own so if anything should go wrong nobody would know. I have read about drug interactions with buprenorphine and think this was the problem with the Gabapentin and Pregabalin. Does anybody know if serotonin reuptake inhibitors like Velafaxine is have the same sort of drug interaction with buprenorphine?

11

I would try the B12 but for some reason my B12 is high, so my body is not processing it. I only have the VA Hospital to work with and they just ignored my sky high levels. I do believe nutrition is key in illness. My allergist says I have gluten sensitivity so I have *again* stopped eating gluten but the weather has warmed up and my feet are killing me when I wear shoes.

12

No need to apologize, sheltielife! I was just curious! You have a lot to deal with. I know you mentioned your blood was thick in other discussions. How high is your hematocrit and how long has it been high?



sheltielife said:

Sorry, I should have said the narcotic wasn't for RA it was for what they say is peripheral neuropathy, which I may or may not have! That is the confusion, as I have a few illnesses that can cause various things and one of them is EM. I am actually on sulfasalazine 3gms a day for my RA, but I also have kidney and liver problems and wonder if these can be causing it. I get a bit mixed up with these forums sometimes, not that I am computer illiterate it's because I feel so bad most days that I can't concentrate at times. I have also been told I have thick blood another thing that can cause EM. The doctors don't seem to have a clue about anything and just seem to want to give me pills whether they are going to be good or bad for me. The only thing I have a proper diagnosis of is RA, which was diagnosed by blood tests etc. quite a few years ago. I could cope with the joint pain and stiffness, but it's what I think is EM is causing me the most problems. I am now confined to a wheelchair as I can't walk due to the pain and the only relief I get is using a bowl of cold water with my feet in freezer bags, as I have ulcers on my feet so can't get them wet. Even then they never get perfect, I constantly have burning pain and they are very red, on rare occasions my feet go blue. I hope this helps solve the confusion?

13

In answer to your question of how high my haematocrit is and how long it has been high, to be honest, I have no idea! I do know that in 2011 it was slightly high, but nothing was mentioned about it, it was just that I saw it on the rheumy's letter which I got a copy of. When I asked the GP I was with until last week she said it wasn't anything to bother about! However, I was taking ferrous sulphate as well given to me years ago and they never said to stop taking it. I have all sorts of test recently and the latest was last year when the vascular surgeon found out that I had thick blood using his words. He referred me to a haematologist for blood tests. It took 4 weeks to get the results and all he did was a JAK-2 test and that was negative so he said no further treatment required! In other words you have had the test and it's negative so end of story. I never got the actual results from the vascular man who I have been discharged from. The haematologist said I was correct to stop taking the ferrous sulphate, which I did myself without the advice of doctors. I admit I smoke, which isn't good, but last year my husband had terminal cancer spreading to his brain and lost the use of his right side. I got no help at all and was expected to lift him from his wheelchair on and off the toilet and get him in and out of bed, so there was no way I could stop smoking, in fact a few doctors have said the stress from giving up would do more harm than the smoking in the situation I was in. So, I think they are putting it down to my smoking, but I'm sure it can't be only that, even though it won't help. I would love to stop, but being confined to a wheelchair and never getting out doesn't make it easy. I have actually bought some e-cigs, but they don't seem to do it for me. The good news is that I am now back with my old GP, long story why I left and he has been today to see me. He was very concerned and he had actually heard of EM. He also agreed that it was hard to know the actual cause due to various things wrong. He is referring me to a dermatologist, I don't know whether that is any use but it can't do any harm, as it might lead to other things. He is also going to check all the hospital blood tests to see exactly what the results were.

14

sheltielife,

You should ask specifically how high your hematocrit is and ask them to compare it to all previous records on file. If you saw previous medical providers in the past decade that have records of blood tests performed for you they are not privy to, you should acquire those, as well.

The JAK2 test was smart to perform, but ignoring the potential consequences of high hematocrit is not. Smoking and oral iron supplementation will both cause hematocrit to rise. Also, simply stopping an iron supplement doesn't mean your iron levels will immediately return to normal. It's a required mineral, but the human body has no way of removing excess iron. That's why most multi-vitamins will contain every bio-nutrient needed EXCEPT iron. Iron toxicity is poisonous to humans.

Erythromelalgia often occurs with myeloproliferative disorders in which the underlying etiology is excess red blood cell or platelet production. Even if you don't have an underlying myeloproliferative disorder like polycythemia vera (which is what the JAK2 mutation test is for), if you have the same symptoms (excess red bloods cells), it's logical to assume you may have the same consequences (erythromelalgia). Either way, you are polycythemic and erythromelalgia may be triggered by polycythemia. Your polycythemia (RE: "thick blood") should not be ignored.

15

CarterDK

I agree completely with all you say and I really mean all you say, if only doctors had has much sense I might get somewhere! I personally couldn't understand why they didn't do the blood letting even though the JAK-2 was negative, as you say whether it's positive or negative doesn't mean that you don't have a problem. You mention myeloproliferative disorders which is something I have never heard of but just looked it up now. One of them is leukemia and to be honest it was a worry of mine at the time as my white blood cells are also up higher than they should be. To just ignore it was a disgrace I agree. One of the GP's at the practice I was with until last week actually said that I did have polycythemia though not the primary one vera. So, that makes it even worse that it was ignored any treatment for it. I admit I thought that stopping my iron pills would help but from what you say it won't. I can only hope that my GP now that has been today who is going to check all the hospital test results actually comes up with something and do something about it. I can't remember if I said I was with him before but a "friend" ruined the relationship shouting at him about treatment of my husband, when it wasn't her place at all. Today he was back to his old self being very helpful. He has always given me copies of blood tests results without my even asking for them. He also allows me to email him, which is wonderful.

It's no surprise that I don't trust doctors, as I have said sometime before but don't know if it was on this forum. Last year he was diagnosed with cancer of the lymph nodes in his oesophagus which spread to his brain. They said it was terminal as it was too late to cure, but he had two lots of radiotherapy the one on his brain made him worse. The thing is that over 4 years ago he had a heart attack and at the time cardiology noticed that there was something going on with the lymph nodes in his oesophagus which needed investigating. Nobody referred him for further investigation. He was seeing a different GP to me at the same practice but not the same doctor. Over and over again I tried to get him to go to the doctors, especially towards the end of 2013 he was having trouble swallowing, but he wouldn't go. He just said he would when I was made better! It was only due to the fact that I tricked him into going that he went. I booked a double appointment without his knowledge and told him he was coming with me. When we got there my current GP asked him first what was the problem! Of course he couldn't not say then and the GP sent him for a barium swallow, which was the start of his diagnosis.

Then doctors expect me to trust what they say, no chance and that's why I have joined this association.

I had exactly the same trouble with my adrenal gland problem it took 2 years to get the endocrine people to believe it. I had been to a renal man due to high blood pressure and he suspected it immediately, especially as a tumour had shown on a CT scan 4 years prior to that, again ignored.

Unless there is a change in Government next month at the General Election things aren't going to get any better as our NHS is in a real mess due to lack of funds and there are so many things being put out to private contract. My hospital is on black alert at the moment the highest level it can be due a lot to do with bed blocking as there aren't enough carers to send people home from hospital that shouldn't really be still there. Again it's a lack of funding.

16

sheltielife,

I would ask your doctor if there are any contraindications that prevent you from having a phlebotomy. There might be, as you have many concurrent conditions. A phlebotomy is the same procedure as when you donate blood. If you're having it done for therapeutic reasons, you'll likely get an IV after. Otherwise, there is no difference. It's an inexpensive procedure. If your iron is too high and a phlebotomy is contraindicated, they could prescribe a chelating agent.

Why were you prescribed an oral iron supplement and how long were you taking it?

17

CarterDK

I can't see there being any reason why I shouldn't have a phlebotomy from what I know. Obviously there is some answer just whether the consultants are prepared to listen! I was prescribed oral iron quite a few years ago, can't remember when it was because I was anaemic. I had an endoscopy downwards and they found that there was blood in my stomach. It was done at a private hospital as at that time I had insurance paid for by my husband's company who paid it until he was 65 even though he took early retirement. We did think of paying it ourselves but we couldn't afford the costs per month and they wouldn't cover existing illnesses, plus you will see the other reason in the next sentence. Unfortunately, our private hospital isn't very good and the gastroenterologist who had only just started working there asked where the argon was as he would have used that to stop the bleeding, but they didn't have it. He was disgusted with that and said in the future even paid for things needed to be done at the NHS hospital as the equipment was a lot better. It was apparently down to my anti-inflammatory drug they said and he put me on Omeprazole to counteract it. Each time I was taken off the iron I became anaemic again and so the doctor said to have one a day instead of 3. From then on it's just carried on being given to me. As I guess it must be at least 6 years that I have been on it as my husband was 70 when he died and was insured until 65 and he would have been 71 in June. Plus, after that endoscopy I had pre cancer cells removed from my nose using the private health insurance, so it might be even longer than 6 years. I do have all my medical records up to the end of last year, but they don't include all the blood tests results in detail. I requested them as I knew there were things missing off them from what had been said at the doctors. There were about 5 things missing, including an eye operation, a visit to cardiology for palpitations, which they diagnosed as sinus tachycardia. My pulse is always very fast, but the cardiologist said that everybody was different. It's many years since I have had a normal pulse rate it's always over 100 per minute and a lot of the time around 130. Another time when that has been ignored. The doctor that came today said it was 103. It's always a lot worse first thing in the morning when I first wake up, it really races. So, I don't know if all this makes any sense to you. You seem to have a lot of knowledge!

18

Sheltielife,

Unfortunately, there is an established link between cigarette smoking and abnormal heart rate values. Smoking causes an increase in resting heart rate. It has negative effects on the entire cardiovascular system, as nicotine is a vasoconstrictor. I obviously can't diagnose you, but a history of smoking could be responsible for an elevated pulse.

Also, were you having regular blood work while taking iron? I was required to have blood work every 3 months while taking an oral iron supplement. Iron is not something you can take for years with no monitoring. You need regular blood work to insure your hemoglobin and hematocrit are not surging.

19

CarterDK

I know about the smoking however, it only went up to a lot whilst my husband was suffering with terminal cancer, previously I had cut down and was just having most times about 5 a day. That had been like that for many years. I would dearly love to give up completely nobody more than me, but it is hard. The stop smoking people always say pick a stress free time I have no idea when the last one was! If only I could get some sense out of doctors then maybe things would be easier to stop. I have actually bought some e-cigs but they don't work well for me. Somebody has told me the ones you fill up yourself are far better, just waiting for a friend to tell me which is best to buy. Apart from anything else how much more money I would have! My husband gave up for about 18 months and gosh was it hard work he was really bad to live with losing his temper at the slightest little thing. In the end I said please go and have a cig and he did and he changed back to the wonderful person I married. The other thing that doesn't help is a friend gave up 35 years ago and then had a heart attack last year. They even blamed that on his smoking 35 years later, so it never leaves you even if you give up it still gets blamed. I probably said earlier even the vascular specialist said that the stress of giving up at this time would do more harm than the smoking. I just hope these new things work as then I won't have the addiction side of things to cope with and the harmful parts of a cig. As they say it isn't the nicotine that is the problem it's the other chemicals in them.

As for regular blood work regarding my iron no it hasn't been done! So, I will make sure it is done from now on.

Thanks for your advice.

20

I have tried Effexor but not for EM. I had post-partum depression 24 years ago and was prescribed this. It was fine until I missed a couple of doses (forgot them while packing for a weekend trip). I got this sensation of whooshing and dizziness every time I moved my head. By the time we were going home, I couldn't move my head an inch without getting this. It felt like my brain was a second behind when I moved my head. It's so hard to describe... So I stopped taking it-- withdrawal symptoms were horrible.

Then, in 2004, I started getting these same symptoms. It had been years but this was the same whooshing, dizziness and weird feeling of my brain being detached from my skull. It had me a near invalid for a year. I still have tinnitus from it.

So, no, I won't try it. It's as bad as the EM as far as I'm concerned. I'm glad it works for you, though. Just be sure to NEVER miss doses.