Sorry I can't help with the BP meds as I live in the UK and I think they all have different names here. I had a bad reaction when my dose of Amlodipine was increased - my feet and ankles swelled up like an elephant's.

Your BP sounds good to me. My renal specialist has said that he would like mine to be below 125/75 so you are well on the right side of that figure.

Good luck with getting the meds sorted out, you don't need all this hassle.

Holy cow!!!!! Sweet Norman, what an amazing bp!!!! I don't know the drugs, would have to look them up, don't know if they are generic or what. I do know that the HCT is for water retention, as I take Benicar HCT.

I know that all those "fillers" not only in our drugs, but our food, gosh, what the heck!!!! I would love to see you get an awesome kidney doctor and find out what they think about all of this.

They switched me recently from Avapro to Diovan 320 mg. It works well for me. What were the symptoms of your allergic reaction? On the paper it lists the allergic reactions like difficulty breathing, itching, tightness in the chest, swelling,etc. So, what med. did they settle for instead of the Diovan? What is your kidney function? What kind of "fillers" do they put in generic drugs? I'm glad your BP is good.

Diovan is not a generic drug, it is the real thing and for a 3 month supply, cost me 275 bucks here in good old NY state. All generic drugs have fillers in them, dye all sorts of bad things, so I've been told. The druggest told me that red dye is one of the biggest offenders of all time and drug companies just continue putting it in generic drugs. You don't know how bad they are until something happens to you, so beware of generic drugs and food.

I didn't have a reaction to the Diovan, I've been taking that for two years, it was another medicine for something else not related to PKD at all. My lips swelled up, and hurt pretty bad, got all red, I looked like a clown. this has been going on for 2 weeks! I was so pissed when I found out what was wrong. Why do drug companies have to put fillers in generic drugs anyway? I don't understand the purpose behind it and neither do the pharmacists. No one seems to know the answer. Why can't they just keep them pure without any fillers in them. My mouth is still hurting pretty bad this morning and nothing I can do but wait for the poisen to get out of my system, oh and put vasoline on them, thats it...

Never heard of Diovan HCT. I am on Lisinopril and that is working good for me. When I went to Roswell for my mammo and breast biopsy both readings were 118/70. So glad that its down. Don't know if its a side effect of reduced kidney function but my creatinine level went back down to 1.3 last month. Glad to be on a 6 month plan with the nephrologist.

YUCK! Alergic reactions are NEVER fun. I never knew that generics had fillers in them. I always thought that they had to be the same drug as the name brand. I learned something new today!

What is the Pindolol for?

No worries about the BP! That is awesome! My Dr told me that as long as I was under 130/80 then I was doing good. I am taking Lisinopril for my BP and it is working wonderfully.

Unfortunately I have no idea if the reaction is due to the kidneys or not. That is definately out of my realm of knowlege. LOL.

Norma, I pray that your lips will return to normal VERY soon and and your mouth will start feeling better as well. (Sounds like a good excuse to eat ice cream!)

God Bless,
Kelly

Diovan HCT is valsartan, an angiotensin receptor blocker/antagonist (ARB) with some hydrochlorothiazide (a mild diuretic designed to control blood pressure, not edema) in it. It's a good medication for PKD patients, comparable to being on any of the other ARBs such as irbesartan (Avapro), telmisartan (Micardis) or candasartan (which has a generic version out). It's the next generation to ACE inhibitors and acts on a different part of the Renin-Angiotensin-Aldosterone System (RAAS) that is a series of hormones excreted by the kidneys to control blood pressure. Low side effect profile; no cough associated with it unlike many of the ACE inhibitors. Your pharmacist should have provided you the full patient dispensing information when you picked up your prescription.

Pindolol is a beta blocker (brand name Visken) and is designed to both lower your blood pressure and slow your heart rate. Beta blockers have a cardioprotective effect as well as the anti-hypertensive effect. Nephrologist often use both forms of medication in conjunction with each other to ensure your BP stays low. Side effects of beta blockers are fatigue and if you engage in strenous activity (e.g. mountain climbing, etc.) you will find your heart rate will often not rise above 100 whereas it used to get higher. It's hard to taper off beta blockers after so many years and your body has simply adjusted to relying on pindolol to keep your heart rate in check. At this point it is probably not doing you any harm and may actually be serving your well as nephrologists often switch their patients to a beta blocker as their kidney function declines (lower than yours is now) and ARBs and ACE inhibitors are contraindicated (there is a point where they lose their renal protective effect and can exacerbate kidney damage, albeit not cyst development).

I haven't been on valsartan in particular, but have been on irbesartan and telmisartan and have had no adverse reactions from them (and I am getting adverse reactions from medication right and left lately, so to me that's a good sign).

As for paying top dollar...you need to contact your insurance company about how to get a waiver to the top dollar premium for the cost of the brand name non-formulary medication. You paid full cost, no copay at all. At least consider using a reputable mail order pharmacy (preferably the one associated with your medical insurance) and check with your insurance about drug coverage in general; it doesn't sound like you have any. They may be assuming that because you're over 65, you should have signed up for a drug plan with them or Medicare Part D (the drug plan via Medicare) and you may have missed something in the mail. This is generally the enrollment season and when you can make changes in your coverage, so look into it now; it's not a state issue, it's either your personal insurance or a Medicare issue.

If you have a bonafide medical need for this brand name medication and have a documented allergy to all other medications, including the generics (and that includes generic candesartan, the only generic in this class of medicationand and plain hydrochlorothiazide). Your doctor will have to provide medical documentation to support your claim, but with persistance, you should be able to get your co-pay reduced to the standard generic premium because of your unique situation. Be persistent. You shouldn't have to pay $50/month (or more) just because you have allergies to fillers in everything else.

Your BP is great, so the medication is obviously doing a good job.

A note about medications, not just generics: ALL drugs have fillers, colors and dyes. Virtually nothing you as patient receive is the pure drug and only the drug (it just can't happen, something has to hold the liquid, powder, tiny beads together). You may react to one brand of a generic medication and not to another simply because one manufacturer used a slightly different filler or a different dye color. Each generic manufacturer will list, what the inert ingredients are, on the actual bottle or on the prescribing instructions which are all available on line. Ask the pharmacist. It's his/her job to help you. It doesn't matter how many other people are in line behind you; you need to know. If you don't recognize the manufacturer's mark, there are a few websites you can use to look them up:

http://www.drugs.com/pill_identification.html

http://pillbox.nlm.nih.gov/

When in doubt, you can also call Poison Control at 800-222-1222 (US and I think Canada as well) to identify what a tablet is (they would much prefer you call them before you take something than afterwards when you're having an adverse reaction). You tell them what the markings are on a pill, capsule or tablet and they will tell you what it is and who made it (they do not have every generic on the market in their database; I just discovered that with a recent prescription that stumped me as I had never seen it before and stumped Poison Control as they didn't have it in their database either....so back to the pharmacy we went the next day and they called the manufacturer directly to confirm the medication, markings, dose, etc., as well as to tell them their info is not available to Poison Control yet.

If you have a known allergy to a specific dye color, or a certain type of substance, it's essential you have that listed with your doctor AND the pharmacy and ask the pharmacist to check all of your prescriptions before filling any to ensure that color, substance, etc. is NOT present in whatever medication is being filled.

Sometimes you just don't know what you reacted to (and it may not even be anything or even the medication itself, it could be something completely unrelated). But with fillers and colors being present in so many different substances, just one more dose, one more iota of a substance and your system has had enough. (BTW, Jessica, allergies can be much more than what you listed...those are more along the lines of life-threatening, anaphylatic type that require immediate ER attention versus just discontinuation...learned from first-hand experience with both types of reactions in the past few years).

Please, for everyone, do your research. Ask your doctor why he is prescribing this particular medication. Is there a better option? Is medication needed (obviously with high BP it is)? Is a generic an option (keeping in mind that all too many doctors are susceptible to drug rep samples of the latest, newest and most expensive medications (there's no profit to sample generics), such as combination medications like Diovan HCT when Diovan is probably less expensive and you can get hydrochlorothiazide for pennies per month...may not necessarily apply to your situation Norma, for others the cost effectiveness of taking 2 small tablets versus one larger one can be immense)? And please understand that generics have the exact same amount of active ingredients in their forumla as the brand name version; they may simply have different colors and different fillers.

Norma, generics are NOT bad; the vast majority of my medications are generics (I only take 2 brand name medications: Synthroid (because even the military acknowledges that maintaining a known, steady source of a critical hormone without a change in fillers or colors (except when you change doses) is essential to the well-being of their patients and Micardis (because it's not yet available via generic and candasartan isn't offered)...and what little I have left of the old OxyContin (I'm tapering off, an experiment in part by choice and in part forced by a incredibly stupid and dangerous FDA decision in allowing Pudue Pharmaceuticals to distribute a "new" allegedly tamper-proof version of OxyContin (brand name) without any clinical trials to determine if tamper-proof coating can dissolve appropriately and release the medication in timely manner (no), causes any problems in humans (absolutely yes) or otherwise may be dangerous (damned tooting it is!)....and I had a very serious adverse reaction to what was supposed to be pain medication but actually induced more pain along with a host of other adverse reactions (more on my tale of woe some other day, suffice it to say I'm now doing okay so far). So no, brand names are not always tested, or tested enough or safe either (I went through sheer hell and the old version is no longer available so pain patients are having serious problems, not only are they getting sick from their so-called pain medication but all too many are not getting any pain relief because the pills don't necessarily dissolve properly or in the right location in the digestive tract to be absorbed...but if you're a junkie there are plenty of sites that tell you how to get around whatever the dreadful "tamper-proof save a junkie today" coating is.

There isn't room to list them all, but just think back over the last 7 years at how many brand name medications have been recalled due to life-threatening complications that were covered up, not tested for long enough, "discovered" just after marketing, etc.: Avandia has a black box warning and serious restrictions on use (recalled in the UK), Vioxx, Baycol, PhenFen, Sibutramine, etc. The list is endless because medications designed to be taken over an extended period of time are tested for 6 weeks and deemed safe and manufacturers simply supress those studies that don't meet their standards of success (which is comparing themselves to a placebo, not another medication on the market). And here in the US we still have medications on the market banned over 20 years ago as dangerous and having perfectly acceptable alternatives in the UK and most other countries: Halcion immediately comes to mind. Never mind it's known to cause LSD-like flashbacks and was banned in the UK back at least as far back as 1991 (but not on US military installations in the UK and was liberally prescribed there and still on the market today). At least with generics, you know the actual medication has been on the market for 12-22 years before the generic could be produced, so a safety track record has been established for the medication itself.

Okay, I'm off my soap box.

BTW, all medications have the same "generic" name, even if they are on-patent, so no matter what country you live in or what doctor you are talking to, irbesartan will always be irbesartan, even though the brand name may be Avapro in the US and Approvel in Kuwait. Knowing the generic name of your medication is important, both because knowing what medications you take by name is important as well as when traveling, being able to go into a pharmacy and telling them you accidentally dropped your last irbesartan tablet down the open drain and having your prescription bottle with your will probably gain you an extra tablet or two to make it back home, whereas demanding Avapro brand name will only alienate the pharmacist who cannot get that for you as it's not available in his country.

Norma, your BP is great and I hope you continue to do well on Diovan HCT and your pindolol (which is most likely generic as you provided the generic name, not brand name....see you can and do take generics and can do just fine) :)

Love and hugs,
Ruth

PS There is no generic Diovan. It won't be on the market till 2012 when the patent expires. The ONLY generic ARB on the market is candasartan (brand name Cozaar).

Hi Ruth, sure hope you are feeling better today. I made a mistake when I said Pindolol, I knew it was brand name Visken and yes, we do have a drug plan, BC/BS of central NY, Excellus. It's tough being on medicare people, don't kid yourself and make sure when you do get on it that you get a drug plan like we have. If you don't, you'll be paying for every script you get. When Jim has his surgery, we had to pay a bucket load of money in NY city and it wasn't because we were in NY city or out of our network becaues we wern't, it's just the way medicare works. It's not free, no way. Between the two of us we pay over 200 bucks a month to medicare and 90 bucks each for our part D for scripts. So be prepared when you do plan to retire and I have no illusions that things are going to be in better in the next 5 or 6 yrs.

Well Ruth, I didn't know that all drugs had fillers in them and yes, I do understand why now, thanks a bunch. You are a wealth of knowledge and should be teaching medicine instead of teaching us about polycystic kidney disease and all that entails. I don't know how your brain absorbs so much information, but you are one smart chick!! with two beautiful kitties!

Crap, I was just going to say that I'am going to ask my about getting the generic form of Diovan but there is none, so I'am stuck with that one. It does work well for me though so I'am not going to complain about money. Because there are no many drugs that I cannot take in the generic form of, I have to pay top dollar for them and usually end up in the hole right about now, last year it was earlier. When that happens, no matter what the cost, you have to pay the full price for everything. So I said to Jim last year, YEAAA, we're going to be able to claim some medical on our taxes....:( what a joke that was. I'am in the hole again and will be until Jan. I also can't take any generic form of cholesterol lowing drugs either, think that wasn't a fun time in my life figuring that one out. She kept telling me that it was all in my head? I wanted to kill her before long, but fired her instead!

Guess I'll tell you all about Jim for a minute and get your feedback. He's doing really well, no problems, EXCEPT....his voice has gone up at least an octave and he's not a happy camper about that. I've noticed this a lot, but didn't say anything to him, just because. The other day, we had the roof replaced on our house and I noticed that his voice was considerable better when he was talking with these roofing guys, lower and didn't sound like a teenager!! I decided to talk to him about it and we both have decided that he needs voice therapy, which Dr. Amin did mention might happen. When he's at home just lally gagging around, his voice is bad, when he's talking with someone other than the family, his voice is more normal, sort of anyway, it's still kind of rough sounding. We're going back to see Dr. Amin the 21st of this month, so will be spending a couple days in NYC and then off to Richimond for Thanksgiving. I had to say to Jim, it's a small price to pay, if your voice is going to be affected but he doesn't like it, so we'll tell Dr. Amin about it and I'am sure he will tell us what do do, how and where to go, I still love this man...:)

OK, I'll get off my soap box too, thanks again Ruth for all your invaluable information. We all appreciate it more than you will ever know!

Lots of love,
Norma...

Norma,
Great news on Jim! What a miracle you pulled off! Just don't forget that's I'm just off I-95 (literally only 2 miles off the highway, just as you enter onto the DC beltway (that dreadful I-95/I-495 area before the Wilson bridge). So if you have a moment, call (I'll send you an email) and we can meet right up near the exit and at least exchange in person hugs and meet!).

Just for bits and bobs and miscellaneous information, Diovan HCT has the following ingredients:

Active ingredients: Valsartan and hydrochlorothiazide.

Inactive ingredients: colloidal silicon dioxide, crospovidone, hydroxypropyl methylcellulose, iron oxides, magnesium
stearate, microcrystalline cellulose, polyethylene glycol, talc, and titanium dioxide.

All those inactive ingredients serve to hold the tablet together, mask any unpleaseant taste or scent, make the tablet/capsule look pretty, and make them easier to swallow, as well as to regulate when and how they will be absorbed in the digestive tract (you don't always want medications to be disolving in the stomach, but prefer they start to disolve further into the intestines to maximize absorption and effectiveness.

A couple of notes. You cannot be allergic to iron itself; you have it in your body and would die without it. But you can be allergic to specific forumulations that carry the actual iron. The same for iodine; without iodine, we would also die (think of the thyroid and massive goiters). It's the rest of the solution, the other ingredients in the contrast or the shellfish, or just way too much of a good thing all at once that causes the allergy, but not the basic substance, which is essential for life itself. So while I have an anaphylactic reaction to one of the IV iron formulations, it's the base the iron is carried in that I react so violently to, not the iron itself. The same holds true for my anaphylaxis to CT IV Contrast, an iodine-based contrast. I am not allergic to iodine (and can eat shellfish and iodized salt and need iodine in my diet), but there is something in the contrast itself other than the mere iodine that I react very severely to, even when premedicated with steriods and heavy duty doses of Benadryl (an antihistmine). There are nuances in medicine and what you've been responding to have been some of the infinite number of fillers (some of which you probably take in other medications with no problemms, but in different amounts and at different times and have no reaction whatsoever. And allergies and adverse reactions (there is a difference, nuanced at time, but different, sometimes in ways only an immunologist can appreciate...which means while my reactions to both iron and contrast were technically anaphylactoid, not anaphylactic...they can both kill you and the concept is the same and the general public uses the term anaphylaxis and that's what's on my records!) can develop over time; they don't always occur upon first exposure. I can't tell you how many times I had a CT or IVG with contrast and had no problems at all...before the liver scan and my first experience with shortness of breath. The second scan, even massively premedicated (I was on a serious steroid high) and I spent 24 hours in the ICU.

I don't know when the other ARBs go off patent; I'd check, but I'll let someone else do the research for a change. Just google the brand name and patent expiration date.

And remember, you can develop an adverse reaction/allergy at any time....and if it's vomiting (such as occurs wtih some pain medications...other than the nightmare that is OxyContin "OP", the new marking on the back of the tablets instead of the old "OC", ask your doctor for a different medication instead of relying exclusively on another medication to mask the nausea. Every medication comes with its own inherent complications, side effects and possible long term repercussions, so the less we can take in the long run, the better off we all are.

Best wishes to all and to all a good night.
Hugs,
Ruth