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Old 09-22-2004, 08:45 AM   #1
skykeene
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Post Bisphosphonates & Rheumatoid Arthritis

Greetings;
I just want to warn everybody that has Rheumatoid Arthritis Do Not take any Bisphosphonates; Actonel, Fosamax, etc. Taking these drugs can induce Systemic Lupus. This is a known fact that has been hidden along with other serious side effects.
These Bisphosphonates are supposed to help with bone restoration in Osteoporosis and Paget's disease. But they are lethal to our body's natural bone regeneration.
These drugs also can cause destruction to the eyes. "Bisphosphonates slow the resorption of calcium from bones, helping to prevent them from becoming fragile. The eye problems include conjunctivitis, abnormal or blurred vision, eye pain, scleritis (an inflammation of the sclera, the outer coating of the eyeball), and uveitis (an inflammation of the uvea, a middle lining that includes the iris). The PDR does not describe these uncommon ocular side effects as resulting from the drugs, even though some of them have been on the market for over 25 years."N Engl J Med. 2003 Mar 20;348(12):1187-8.
I hope you can help spread the word about these drugs. I have been severly damaged by Actonel and feel it is my duty to warn others about these much advertised drugs.
Best Regards,
Karen

I have suffered severe damage due to Actonel and I feel it is my duty to inform as many people as I can about these terrible drugs and their side effects.
Best Regards,
mark54

Last edited by Administrator; 09-23-2004 at 07:32 AM.

 
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Old 09-27-2004, 08:47 PM   #2
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Iwantacure HB User
Re: Bisphosphonates & Rheumatoid Arthritis

Thanks for warning me. I really care for my vision as I know also the medical world couldn't care much about my vision.
God bless you.

 
Old 10-05-2004, 07:22 PM   #3
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NancyH HB User
Re: Bisphosphonates & Rheumatoid Arthritis

Great, I'm taking actenol and have been for 3 yrs, and I have some vision problems. What can a person take for osteoporosis if not these drugs, I have it pretty severe, excersise daily eat calcium til it is coming out my ears, maybe that should be suffice? Darn drug companies could care less what it does to us as long as they make big profits for it, makes me very angry!

Last edited by NancyH; 10-05-2004 at 07:24 PM.

 
Old 10-06-2004, 01:36 PM   #4
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Iwantacure HB User
Re: Bisphosphonates & Rheumatoid Arthritis

You should care a lot about your vision. It's very important. If I was you, I would go to another doctor.
All the best

 
Old 10-10-2004, 04:56 PM   #5
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Re: Bisphosphonates & Rheumatoid Arthritis

I found your post very interesting. Two yrs ago I started fosamax and broke out in hives. Two specialists told me I was mistaken. I recently started actonel and developed a hideous rash with blisters on inner elbow. I believe it was the actonel. I have taken mtx, arava and many other things with no side effects. I have taken enbrel for 2 yrs. and have no side effects and it is helping the RA enormously. I am very reasonable and try to trust my doctors. I now take only enbrel and calcium and sit in the sun for 10 minutes a day for vit. D. It wouldnt surprise me that osteoporosis drugs are the next things pulled off the market.

 
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Old 12-11-2004, 06:00 AM   #6
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Re: Bisphosphonates & Rheumatoid Arthritis

Hi Karen and all,

If one types in "actonel side effects" in your search engine, one of the side effects that is mentioned is "vision changes"
Among many others others is "dry eyes".

Of course, doctors are someowhat trapped by the advertising and their past success with these meds, so they prescribe and hope that the patient is not
one who will be adversely effected. Always ask the pharmacist about side effects BEFORE taking a new med. If you don't ask, you may not know what
to watch out for. They usually have printed hand-outs, so you won't have to rely on memory.

If taking bisphosphonates orally for a long term is a problem, then maybe
the intravenous route would cause fewer ongoing side effects because
it is only taken a few times during the first month or two.

Unfortunately, those with RA can have side effects such as dry eyes
(Sjogren's Syndrome) and may blame this on taking any med if they experience the problem soon after trying anything new.

Has anyone with RA been thoroughly checked for a hidden infection and
been denied antibiotics when makers for Sed Rate, C Reactive Protein, Antinuclear Antibody, White Blood Cell Count and Rheumatoid Factor
were elevated. Many doctors still doubt that RA has an infectious cause and
are reluctant to prescribe antibiotics. (especially long term)

Here is a link to a government site... regarding Juvenile RA
[url]http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm[/url]

Last edited by Ron; 12-11-2004 at 06:01 AM.

 
Old 12-19-2004, 12:26 PM   #7
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Re: Bisphosphonates & Rheumatoid Arthritis

Thanks for the heads up. I am new to the board. I have had RA for almost 8 years. I began treatment on Remicaid about a year and a half ago in combination with my methotrexate. I was showing great results till about 6 months ago. My doctor has increased my dosage and frequency on the Remicaid, but over the last few months, my symptoms have been getting increasingly worse. My last round of blood work came back high for nuclear antibodies, a much higher SED rate and positive RA factor and it is feared I have developed drug-induced Lupus from the Remicaid. Since my RA is so active right now, I am fearful as to my treatment options if I come off the drugs. Waiting is the hardest part, and not knowing my options is worse. The risks we take for a better life.... I responded poorly to Enbrel prior to taking Remicaid so I am giving the doc time to think this one through. Just a heads up. Take care and God Bless.

 
Old 12-25-2004, 02:15 PM   #8
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ataylor HB User
Re: Bisphosphonates & Rheumatoid Arthritis

I've had RA for 17 years and have been on enbrel/methotrexate combo ever since it came out (4-5years). I've found the more calcium I can stuff in the better I feel, and not just in my bones. When I don't take extra calcium I have mood swings, menstrual cramps, hunger pangs and cravings... I'm not my usual sunny self, in other words.

It's interesting that a lack of calcium seems to be a common tie to the various autoimmune disease profiled here.

 
Old 12-25-2004, 04:18 PM   #9
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Re: Bisphosphonates & Rheumatoid Arthritis

Quote:
Originally Posted by dwatson
Thanks for the heads up. I am new to the board. I have had RA for almost 8 years. I began treatment on Remicaid about a year and a half ago in combination with my methotrexate. I was showing great results till about 6 months ago. My doctor has increased my dosage and frequency on the Remicaid, but over the last few months, my symptoms have been getting increasingly worse. My last round of blood work came back high for nuclear antibodies, a much higher SED rate and positive RA factor and it is feared I have developed drug-induced Lupus from the Remicaid. Since my RA is so active right now, I am fearful as to my treatment options if I come off the drugs. Waiting is the hardest part, and not knowing my options is worse. The risks we take for a better life.... I responded poorly to Enbrel prior to taking Remicaid so I am giving the doc time to think this one through. Just a heads up. Take care and God Bless.
-----------------------------------------------------------------------

Hi Dwatson,

Please ask your doctor what else could cause a high sed rate, Antinuclear Antibody and a positive Rheumatoid Factor.. If he does not mention
"infection" as a possible cause, YOU mention it.

Then ask to be put on long term "new generation" tetracyclines which are more effective than the original med. (If your markers start dropping,
you will know you are doing the right thing.) It will then be up to you to
plead with the doc to be left on the antibiotic as long as you are improving.
In time, you will be able to reduce the immune suppressants as you continue
to feel better. It could take a year or more, depending on how entrenched
the infection is.

Good luck

Ron

 
Old 03-04-2005, 09:30 AM   #10
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Re: Bisphosphonates & Rheumatoid Arthritis

My son is on Kineret and injectable methotrexate and has been for the last year. He has done so well he in no longer in a wheelchair and very littl pain,We are now unable to get the injectable methotrexate, anyone else have that problem? What the deal with nor being able to get it?

 
Old 03-04-2005, 10:45 AM   #11
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Re: Bisphosphonates & Rheumatoid Arthritis

Quote:
Originally Posted by old waitress
My son is on Kineret and injectable methotrexate and has been for the last year. He has done so well he in no longer in a wheelchair and very littl pain,We are now unable to get the injectable methotrexate, anyone else have that problem? What the deal with nor being able to get it?

Hi Oldwaitress,

The improvement your son has seen may not be permanent.
Bone pain can be due to trauma, osteoporosis etc.. Methotreaxate
is a chemotherapy that prevents the immune system from attacking
the body's own tissues. It is not a cure, but instead carries its' own risks
as a carcinogen. It shortens lives as do all immune suppressants.

I ask you if your son has had a complete blood test to look for indicators of an activated immune system and products of a hidden infection?
Sed Rate, C Reactive Protein, Antinuclear Antibody, White Blood Cell Count and Rheumatoid Factor can indicate a need to treat with anbibiotics until the numbers return to normal ranges.

The thinking about RA is changing as more people are being successfully treated with long term antibiotics... (Studies have been done showing that
all subjects improved and none were harmed.)
Didn't a similar thing happen in the 80's regarding the treatment of
Stomach Ulcers? We all know that Helicobacter Pylori is treatable with a week of antibiotics and the ulcers go away as well.

I could post links, but that is not allowed... You can do searches yourself and find the information.

Regards..
Ron

Last edited by Ron; 03-04-2005 at 10:49 AM.

 
Old 03-09-2005, 05:31 PM   #12
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Re: Bisphosphonates & Rheumatoid Arthritis

My doctor wanted me to take Actonel for ostepenia, but I read on-line that some of the side effects are heart disease and skin cancer. He made a special phone call to me at home to ask me if I filled the prescripton he gave me (what doctor does that?, I was wondering if the drug company put pressure on him to push Actonel). I told him to forget it, that I would just take calcium supplements along with the other appropriate vitamins and minerals. I also told him that I read only 50% of women who develop osteporosis will get a fracture, so I will take my chances. He replied,"oh you really have done your homework!"
I asked the doc since I have osteopenia in the hip only, what would the Actonel do to the rest of my bones that don't need any medication, and he said he didn't know. I also wrote to the drug company a few months ago (I forgot which one makes Actonel) and asked the same question and guess what? I never received a response!
I posted the info regarding Actonel on the osteoporosis boards a few months ago. I know someone who has skin cancer on her face who was taking Foxomax, but I don't know if it's related, I didn't read any warnings regarding Foxomax and skin cancer, only Actonel.

 
Old 03-23-2005, 08:58 PM   #13
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Unhappy Re: Bisphosphonates & Rheumatoid Arthritis

Hi. Have just found this great chat place. Have had osteoporosis for many years first having HRT treatment plus calcium and then (after a breast cancer scare) discontinued HRT and went on to calcitrol. Density reports were good but didnt have one for aouple of years (shifting house) and had a compression fracture T12 about ten weeks ago. Doctor advised actonel and (against my sisters wishes....she is a very bad sufferer with osteo) I took one tablet...that night was rushed to hospital with a severe bowel haemorrhage. None of the Doctors involved will blame the actonel, rather a coincidental bleed from diverticula (which I have also had for years without one single bleed of any kind) Has anyone else had this problem. Incidentally my sisters Doctor told her that she had had to send five patients to hospital from Fosomax induced bleeding. It is ten weeks now since the compression fracture and am still in great pain on the right side and am cross that I can now not take any drug other than the calcitrol which obviously did not prevent the fracture. Find all your comments very interesting...cheers

 
Old 03-24-2005, 10:53 AM   #14
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Iwantacure HB User
Re: Bisphosphonates & Rheumatoid Arthritis

Hi all. THanks so much for warning me for all those side effects.
You don't know how much I appreciate it. I applaude to you all.
By the way there is another medication in the market that can cause sever side effects for your vision, vision fluctuations!, blurry vision, double vision...yep you guessed it right, that is Plaquenil and Prednisone. you will need to wear glasses. I also want to warn here that if you have auto-immune disease such as lupus, RA or any other auto-immune disease you will never be able to fix your vision! once the damage is done it's done!.
The reason to it is because auto-immune disease involves with dry eyes and therefore today doctor refuse to do the laser/lasik vision correction on dry eyes!.
Also, with auto-immune disease you cannot wear contacts(because of dry eyes). So what you have left?
So, vision fluctuations, double vision and nice pair of glasses together with your illness. It just doesn't worth it.
I was offered those drugs, doctor told me that it doesn't cause damage for vision, No health problems(diabetic for example because of those drugs).
I'm glad I have this forum. Thank you all people, you are doing a great job!
Well, keep on posting here, you are doing a great job!

Last edited by Iwantacure; 03-24-2005 at 11:02 AM.

 
Old 03-25-2005, 11:11 AM   #15
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Re: Bisphosphonates & Rheumatoid Arthritis

Quote:
Originally Posted by olivep
Hi. Have just found this great chat place. Have had osteoporosis for many years first having HRT treatment plus calcium and then (after a breast cancer scare) discontinued HRT and went on to calcitrol. Density reports were good but didnt have one for aouple of years (shifting house) and had a compression fracture T12 about ten weeks ago. Doctor advised actonel and (against my sisters wishes....she is a very bad sufferer with osteo) I took one tablet...that night was rushed to hospital with a severe bowel haemorrhage. None of the Doctors involved will blame the actonel, rather a coincidental bleed from diverticula (which I have also had for years without one single bleed of any kind) Has anyone else had this problem. Incidentally my sisters Doctor told her that she had had to send five patients to hospital from Fosomax induced bleeding. It is ten weeks now since the compression fracture and am still in great pain on the right side and am cross that I can now not take any drug other than the calcitrol which obviously did not prevent the fracture. Find all your comments very interesting...cheers
Hi Olive,

The problem with Fosamax is well known and a solution has been found...
If the Fosamax is taken weekly instead of daily there is much less risk of
bleeding.

Anyone with swallowing issues must also ensure that the pill reaches the stomach, so it is wise to take it with, or at the beginning of a meal.

There are other ways of administering bisphosphonates, such as a Calcitonin Nasal Spray or an intravenous pamindronate which is a more direct way of getting into the bloodstream without going through the digestive system.

Ron

 
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