Called my cardiologist today and told his assistant what was going on. They had me do a bp check while on the phone 148/86 and pulse 125. He was concerned, the heart doc wasn't in today. I could either go to ER or go to internest (PC). Called and made an appointment and saw him.
He was pissed off! Who prescribed Estradiol - "You did," I said. NO he did not. He prescribed a generic for Vivelle Dot and they switched it to generic of the generic, one that he would not recommend me to be on. Yes, this would most certainly be causing the migraines and heart episodes. And NO, NOTHING will help hormonal headaches.
They also switched my thyroid medicine that I have been on for 25+ years. He was upset about that too. Said that will most likely also cause a reaction from my body and to get another script (again).
I am SOOOOO MAD right now. How much of what little money I have coming in is gone out the door! These prescription carriers shouldn't be allowed to just override what the doctors order!
AARRRGGGGHHHHHHH
Oh my goodness!
This cannot be legal!?
I am grateful you got in to the doctor today before something real terrible happened!
shocking !! glad you found out what was causing the tachycardia, not so glad to hear it could have been avoided!!
there is a way to help the headaches though, my mum had daily migraines for ayear, hormaone realted she was told, they tried everything nothing helped, she went to a homeopath, she put her on phophorus , 3 sachets, placed on tounge for a day, then none for 3 months , then another 3, each 3 months, they stopped!! she went down to around 2 a year, and no side effects from the medecine, at all. she swears by them, its worth a thought as headaches are horrible things
T x
Hi :)
I think homeopathy can be a good thing too but the same remedy doesn't work for everybody. Its important to actually see the homeopath yourself but they can cost a bit. Three of my kids had eczema. Conventional medicine did not clear it. Homeopathy did but all three had a different remedy. One had calc carb, one had belladonna and one had sulphur. With homeopathy one size doesn't fit all.
Take care - Scottie :)
sassie, I am assuming you live in the USA. Is there anyway that you can call the outfit that sends you your drugs. I can't believe that they did that substitution without checking with the doctor. Also, switching thyroid meds can cause issues for some people. I am amazed at this whole thing.
Obviously I am spoiled with my supermarket pharmacy that calls and checks with the doctors and also will call me and check on things also. I am on the first name basis with my pharmacists and have known them for many years. Guess I had better be thankful.
Do you have to order your drugs from this outfit? Is there another outfit that you could use. Does your insurance tell you who you have to order meds from??? Live is too darn complicated these days. Hope you get feeling better soon. Irish ;D
Yes, I live in the US, Ohio actually. I just was put on medical disability this past January and I had to have all my scripts rewritten. The mail order program is called Express Scripts. They sent me a brochure of the name brands and the brands that they recommend. I printed out a spreadsheet with the medicines I am on and the names of the medicines that they recommend. He reviewed the list and we went over the medicines. My Levoxyl (thyroid) that I have been on for 25+ years was written and they changed it. He was not pleased and advised me not to take it and he would order a new script and put DAW so they would not be able to override him anymore. He was really pissed off that I was put on the estradiol and went back thru my records and told what he ordered. He said, "they wanted your medicine changed for a generic and then they changed the generic to a lesser generic - basically garbage, and one that I WOULD NOT RECOMMEND!!"
I was told to go home, call them and find out the costs of the two choices he wants me to have and then call him back with a fax number so he can order it specifically without any changes. I was so tired and jittery and my heart was pounding so bad, that I came home and went to bed.
These two medications he said would definitely cause my system upset and trigger terrible migraines which I am already acceptable to. They also changed my Ambien CR to a generic when he wrote DAW on it to begin with. They said it was a step up drug and I enclosed a letter of all the medications that I have tried and only the Ambien helps me with sleep. They sent the garbage anyway.
Not knowing how this company works, I sent in all the scripts at once and I've paid for four that I know of that he did not order for me. It seems like a chapter out of a Steven King book but I feel really terrible now and he looked to appalled when I told him I was literally vibrating the bed and woke myself up with my heart beating so strongly. I take hp meds (they changed them too) and my bp was 145/86 hr 125. I took the patches and told him I'd go cold turkey and worry about the sweats before I felt that much pain again. I will not put that garbage on my skin ever again.
And to think that the RA said I was close to remission by taking the Plaquinl at the end of Feb. and now I am in full flare up once again. :'(
Sassie,
I found out the hard way that in TX the dr has to write BMN on the script otherwise they can switch it to generic. Here is what else I learned:
The laws vary from state to state.
The pharmacies are supervised by a state board of pharmacy.
I filed two complaints against Walgreens. First time they switched my thryoid med. I was sick for a month and did not know why. Turns out the Dr's office called in the script and failed to say brand medically necessary. I got generic and the fact that I got generic was not shown on the receipt - only on the bottle itself.
The other complaint - the pharmacy sold me a drug without reconsituting it - it was a powder and a cream. The antibiotic was the powder and needed to be mixed with sterile water and added to the cream. I took it back to the pharmacy and complained. After the second incident at the same pharmacy I filed a complaint. The state pharmacy board took months to investigate. I just got the results from my complaint about a month ago. They sent the pharmacy a letter telling them how to dispense drugs - no fine or anything.
The pharmacy board in TX is made up of pharmacists. So you have the fox guarding the hen house at least in TX. Needless to say I no longer use Walgreens and I am very careful about checking for mistakes with all pharmacy orders.
Tuckerdog
This kind of thing makes my blood boil!
Besides the FRIGHTENING episode, now we have dear Sassie all worn out and feeling poorly again! We can only hope there will be no long term consequences for her.
I marvel at the patients' wear and tear that is acceptable to the watchdogs out there! Do we have to drop dead in order to merit a consequence?
These pharmacies should not be allowed to make double changes without permission. AND THEY CERTAINLY SHOULDN'T IF THE SCRIPT SAYS NOT TO!
When I lived in Colorado, my doc wrote "Do not use generic substitute" in big letters so there would be no "misunderstanding" his order.
Im having trouble tolerating even the slightest bit of estrogen....this autoimmune thing and hormones dont seem to mix well. Ive been in severe flare almost 2 years now, ever since my hysterectomy. Im getting almost daily migraines. I agree, nothing helps with hormone headaches...
The generics are not the same...I finally found an honest pharmacist who told me they werent as good, as most use cheap fillers in them, causing us to have
maybe more reactions to medications or them simply not working? Yes, just goes to show how cautious we have to be, and to pay attention to the drug
manufacturer on the bottle..I check all the time now.
Gursie
Have you ever had a look at the SGSM (Survivors guide to surgical menopause) site? It has a wealth of information about hormone imbalance, and a very knowledgeable moderator, who I think may be a endocrinologist. I would thoroughly recommend reading some of the posts - and asking questions, as you will get a very well considered response.
Sending you my verybest wishes.
Kathyx
For the drug change that happened to you, blame the insurance company also or only.
Unless the doctor says no substitutions, the insurance tells the pharmacy to switch to the generic brand! Most people don't know this. It is the insurance's way of 'trying to save a buck" I guess.
There is a generic available for my thyroid medicine BUT to switch my doctor says he'd have to run at least 3 thyroid blood tests to get my levels right with the generic and I've have to put up with the fluxuations that thyroid levels give you when over or under active! The medicine is only a couple dollars less too - so my doctor says with the costs of the tests, the insurance really isn't saving any money. My mother when she was alive was switched to a generic bp med that skyrocketed her bp. :o
Sooo when ANYONE tells me that the generic medicines are the same as the brand name medicines, I get really really ticked. >:( I think it is the "insurance companies' press" so don't believe them!!
I am positive that I read that estrogen therapy is not recommended for people with Sjs. I can't remember why, though.
picese,
My insurance co sends me a letter every time I get a new drug when the generic is available. We don't have to get the generic but they recommend that we talk to the Dr about the change. From my experience with complaining to the pharmacy board I found out that the laws regarding pharmacy vary from state to state. For example, when I picked up medicine for my motherin law in Puerto Rico I had to sign a paper acknowledging that I was getting a generic instead of the name brand. In TX it was a simple process - if the RX does not say brand medically necessary the computer makes the switch. This happened even though I had already had 3 RX's for thyroxine where the RX said brand medically necessary. My Dr told me that in some cases it does not make a difference but in the case of synthroid there is a big difference. At the time of picking up the generic thyroid I was not aware of the switch because it said nothing on the label on the bag. I found out that I could have requested the name brand but because I was making the request I would have had to pay a lot more because I was making the request and not the Dr on the RX (which had been called in). I no longer allow the office to call in the RX. I get the RX in writing and make sure it says BMN before I leave the Dr's office.
Tuckerdog
Hi Babs
That's interesting about the oestrogen. If you look at Sjogren's Syndrome on the ARC (Arthritis and Rheumatism Council) site, you will see that hrt can be beneficial for people with Sjogrens.
Personally, when I missed my hrt (oestrogen only) for a day, I went into an almight flare, that I never want to repeat.
Let me know if you find out where that information was.
Kathyx
Hi, Katy. Unfortunately, I've read so many library books about Sjs and autoimmunity that I can't recall where I read it. After doing a little online research, it appears there have been conflicting studies, with some showing estrogen bringing on Sjs, and some showing a benefit of HRT in low doses.
Yeah, I've been reading about HRT and trying to decide if I want to fight my doctor for it.
Apparently the thinking has changed in the last couple years as research has shown therapeutic benefit if the dose is lower and certain risk factors are considered.
The thing that is kind of stopping me is a study showing women on HRT tended to weigh more after a certain period.
I don't need any more joint pain!...and I feel like my fat fight is hard enough without adding to it, but on the other hand, if I felt better would I be more physically active? And could the weight difference in the study be muscle? They don't say.
Janna
Hi Janna
I can truthfully say that Igained around 7 lbs in the first 6 months of hrt. Then the weight stabiised. To me, that is a small price to pay, considering I lost the hot flushes, the depression and some of my joint pains.
Interestingly, I have cut my oestrogen dose by 1/4 this past 10 days, as I wondered if it was causing an excess around my middle. For 4 or 5 days I have been feeling quite weepy, and my joints are beginning to flare. Tonight I'm going to increase again. The confusing factor in this past 10 days or so is that I have had a urine infection and been taking cefalaxin. So, with hindsight, it may have been a bad time to reduce. I will try again at some point in the future, but feel I need to keep as healthy as possible just now, so it's not a good time to manipulate hormones.
I think the thing to remember with hrt, is that a trial does not have to become permanent, so long as you reduce gradually.
Kathyx
Wow, Kathy!
Knowing that you experience less joint pain with HRT is extremely helpful to know. I certainly understand that there is no guarantee my results will be the same but I'm really encouraged to give it a try.
I've been thinking I need this for the last year and a half but just don't have the energy to scrape and grovel for it!
Janna
Hi everyone,
Sorry I wasn't on for the last two days but I was out of it. My heart has finally gone back to normal and I don't feel so weak as I was feeling.
Now I just have to work on all the aches and pains, especially in my back.
Thanks for being there with me!!!!
SassieCat
I was "gutted" as I call it back in 1990---tubes, uterus, ovaries and appendix. My gyne started me on Premarin the day after surgery. I asked him how long I should take it and he said to figure out when I was going to die and quit 5 years before my demise. :D :D
I was on the premarin .625 for about 13 to 14 years. I can't remember which year I quit. All I know is that I got to the point where I felt like I didn't want that going through my liver when I was on so many other meds. Also, our fatty tissue holds on to the small amount of estrogen that our body makes even when the ovaries are gone. I have enough fat storage to hold me for at least another 10 years.
My estrogen level is very low when blood work is done but I don't worry about it. I am on antidepressants and I think that keeps me from getting to upset. Also, I have sweat like crazy years before my ovaries were removed and I can't tell any different. I just plain sweat a lot and have to drink a lot to keep my fluid intake up.
I don't know what to tell you gals that are suffering with your menopause. I do know that I have a friend whose doc put her on Prosac about 1 week before her period and the week of her period to keep her on an even keel. Guess it worked for her. It really is a crap shoot knowing what to do cause no matter what we do it is going to cause cancer. Good luck all. Irish ;D
Irish,
I had complete 'gutting' (lol) eleven years ago. I used to take premarin but for some reason my endo doc wanted me off and he put me on vivelle dot as it's plant based hormone more like our own.
I sweat easily, as did my father. I think I literally melt when the hot summer days are here. I still don't know what I am going to do about the hrt. I've been in a daze these last few days. My bp goes up and down and still hasn't settled yet and I feel weak. I try to get up to do something and I'm so tired I could almost take a nap and then I start hurting.
Next week I see my heart doctor. I skipped my last appointment simply because I didn't want to go. Sometimes I get so tired of seeing doctors that I mentally just take a break from them. I will have to change my bp meds from Coreg CR to a generic twice a day pill. I just can't wait to see what all fun that is going to be. I'm thinking I'll ask the doc to call in my Levoxil and throw the generic crap away. I really don't need my system to get off kilter any more. The fibro pain afterwards just isn't worth the stress.
I still had my appendix and gall bladder after my surgery. I had a friend tell me, "they just took away the babies and left the playpen!" thought you'd get a laugh at that one!
SassieCat, just failed to two finger type you answers .Got shut off line ,this will be breifer. I'm studied in formal med ,holistics and herbs tutored all sciences and maths ,all chemisties.over 30 yrs now .Helpful web sites formal and holisti c herbal, all in one in some cases. Medline Plus.com, HolisticOnLine.com, PDRhealth.com, Drugs.com, WrongDiagnosis.com, . Hormonal imbalance,hot flashes, head aches, research; Black Cohosh, Dong Quai, Daniana, to start always cross referance 3 ways. For brai fog Gotu Kola, Ginko Biloba and Blessed Thistle, folic acid for bloob oxygen to brain. Before dagnosis I couldn't use things that would help me and often in the morning I was inchoherant. My Sjogren's is very severe, and my spinal vertabra are being desrtoyed, spine collapsing by unknown . Likely a rare lymphoma, I'm, one of the 6%. Hurt to sit more than a little but I've studied well over two thousand pages and much reseach. Even my own on the EXACT chemical triggering of autoimmune disease by a virus. Sjogren's Foundation administrater asked for my notes. I'm learning to type now. And Hope to get it out soon. Stuck in doctor referal circle. My case is rare, And in southern California there are NO autoimmune clinics . Hope this is a Hepful start for you , want to do what I can . Herb books user friendly for srarters, Today's Herbal Health, the essential referance guide, by Louise Tenny, M.H. and The Little Herb Encyclopedia by Jack Ritchason N.D. Hope this post this time I'm only good at coputer research. back screaming gotta lie done. More tricks later. Rostradamus
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Hello Rostradamus, welcome to Sjogren's World and thank's for sharing your studies and experiences.
As always I'd like to remind everyone that all alternative medications and supplements may have side effects, interactions with RX meds, and everyone reacts in their own unique way to them, just as we do to conventional medications.
Please discuss their use with your doctor and/or pharmacy, and research them thouroughly before trying.