Arthritis

[MandysMom]

Snowball, you should not need a driver for Remicade infusions. My hubby had them for a year or two, and drove himself. They usually combine Remicade with a steroid drug, often Decadron, to reduce reactions. If you have blood sugar issues, you need to know all steroids injected or pill can cause a rise in blood sugar, usually just for a few days after infusion. It was a serious problem for my hubby because he is both type one diabetic and very sensitive to Decadron. They cut it in half and insisted he take that with the Remicade and his blood sugar shot up to over 400. As I said he is unusual to have it go that high and on half Decadron, but it's something to be aware of. Other than that he did ok on it but really did not like the drug and refused Decadron after first dose so taking Remicade with no steroid I am sure led to him not liking how he felt but he continued infusions for a year or 18 mo. He did end up with a cancer tumor in his sinus and the various Biologics he took over about 6 years may have caused the tumor but no real way to prove it other than ALL Biologics have in labeling "May cause lymphoma or other Cancers". It's a risk vs benefit you have to understand and take into consideration. He no longer can take any Biologics and his psoriasis and psoriatic arthritis are back pretty bad. We work daily on diet and balancing that with his diabetes. I hope you can get relief you need to allow enjoyment of travel. Please know I'm not trying to scare you as these drugs have been a miracle for many people, but it is good to go in with eyes wide open.
Velda

[JudyJB]

I can't remember the drug my younger son took for his arthritis, but I know it was a pill. In any case, he DID get non-Hodgkin's Lymphoma at age 38!! It was Stage 3 or possibly 4 before they caught it, so if you take one of those drugs, make sure you get checked often. His first symptom of lymphoma was a one-sided huge tonsil that was removed and turned out to be malignant.

On the other hand, the chemotherapy DID put his rheumatoid arthritis into remission, and he has had no more problems with it. He has been clear of lymphoma for three years, so all is good for now.

[Excel]

After being contacted Saturday by Kaiser rep. who said they could not approve recommending a RA doctor appt. as my Dr. told them he had told me to get a blood test...he had not of course, but that's what he told the committee...The Rep told me to find a new Primary care doctor in my area & gave me the number for Member Outreach to call. However, they were closed Sat. & Sun. so I called today. They recommended a dr. that has some background in RA so I made the change. Have an appt. tomorrow. I am very grateful for all the input given here....had no idea what this disease is nor all the possibilities for treatment ... I also looked it up on a medical site & read about the lumps that sometimes appears in RA.... I have one on my arm but never thought to mention it as I emailed previous dr. about it months ago & he kind of said to ignore it that it wasn't anything to worry about. That was before I started out having all this pain. Anyhow, read on the web about this 91 yr. old lady that contacted her dr. about feeling dizzy & the run around she got even when her daughter got involved. What it amounted to was that our system simply does not do a good job with health care for the elderly & most times ignores their complaint & orders unnecessary tests etc., rather than simply listen to the person & pursue that infor. In other words deal with what the person says rather than hearing only what they want to hear & ordering care to support their opinion.... scary world for those of us over 60......

[Birdie]

Oh my! So glad you got a new doc. I cannot get blood work without a script. Bet he never gave you one! Oops, must have written and failed to tear it off for you. Looking forward to hearing how the new one works for you. Just know if this, too, is not a fit, go back to the beginning and try again.

You might look for a local support group for the purpose of finding a doc from other locals. Nothing local reach out a little farther until you make a connection.

Best of luck! Let us hear from you.

[snowball]

Sheila. Can you tell Kerry I sent her an email? Thanks.
Sandi

I bet she knows already
but will do
sheila

[snowball]

Snowball, you should not need a driver for Remicade infusions. My hubby had them for a year or two, and drove himself. They usually combine Remicade with a steroid drug, often Decadron, to reduce reactions. If you have blood sugar issues, you need to know all steroids injected or pill can cause a rise in blood sugar, usually just for a few days after infusion. It was a serious problem for my hubby because he is both type one diabetic and very sensitive to Decadron. They cut it in half and insisted he take that with the Remicade and his blood sugar shot up to over 400. As I said he is unusual to have it go that high and on half Decadron, but it's something to be aware of. Other than that he did ok on it but really did not like the drug and refused Decadron after first dose so taking Remicade with no steroid I am sure led to him not liking how he felt but he continued infusions for a year or 18 mo. He did end up with a cancer tumor in his sinus and the various Biologics he took over about 6 years may have caused the tumor but no real way to prove it other than ALL Biologics have in labeling "May cause lymphoma or other Cancers". It's a risk vs benefit you have to understand and take into consideration. He no longer can take any Biologics and his psoriasis and psoriatic arthritis are back pretty bad. We work daily on diet and balancing that with his diabetes. I hope you can get relief you need to allow enjoyment of travel. Please know I'm not trying to scare you as these drugs have been a miracle for many people, but it is good to go in with eyes wide open.
Velda

I'll call Kerry and tell her what you said Velma she isn't answering my text so must be either in bed or busy
if I don't get a hold of her tonight then tomorrow night when I'm on
I'm sure she will appreciate the feed back
sheila

[SoCalGalcas]

Today, Tuesday, is your appt. I am hoping for good results from the new doc. Please, keep us informed. We are all with you on this. Lyn

[Excel]

Well...went to the new Dr. yesterday....I am confused to say the least. He explained arthritis somewhat, told me I had osteoarthritis after looking at my hands. Said my swollen ankles were the result of retaining water & I should reduce my salt intake. swollen feet, toes... no comment. Said I should stay off my feet as much as possible. Limit my hand functions as much as possible especially my right hand. If I want to continue gardening I should buy the special garden tools made for people with arthritis & I should limit my time to 15 minute periods. Said the lump on my arm was no big deal & Kaiser no longer approves removal of this kind of lump... ignore it.
Did not offer any treatment but did want me to have x-rays taken of my hands. (Didn't do that as there must have been over 50 people waiting....will go back sometime this week). Dr. kept saying I have to realize that age is the factor & I will not be able to do what I've done in the past & I should accept that. He said there is no cure & didn't feel there was anything to 'control' the progress of the arthritis.....
I am totally disappointed. I had expected help to relieve the swelling so I could at least keep up with my housework. He said I should consider getting a House cleaner....Said I would never be able to clench my hands again (like when you wring out a rag or sponge etc., when cleaning)....Having fought Kaiser to get this far...I don't know what to do next. I feel like he's sort of echoing what the previous dr. said & not listening to me either. Never mentioned getting a blood test either......
Am I crazy or am I expecting too much. I am not over weight (well maybe 10#s or so), nor a couch potato, nor looking for attention but I am getting stressed about all of this (which they ask you.... do you feel safe at home ??????, are you stressed about anything ????, do you exercise at all ( dog gets her 30-45 min. walk daily)... Yep! I'm going crazy now for sure !!!!!!!!

[OregonLuvr]

There is a test for Rheumatoid arthritis it is called Rheumatoid factor, also ESR is a sed red that determines inflammation and a CBC to check for anemia or infection. Do you know if you have had these done?

Rheumatoid factor. The lab will check for rheumatoid factor (RF) antibodies that collect in the synovium of the joint. These antibodies are present in about 80 percent of RA patients.
Erythrocyte sedimentation rate (ESR) and C-reactive protein. A high erythrocyte sedimentation rate may indicate inflammation in the joints—as do high levels of C-reactive protein.
Complete blood count. This includes hemoglobin and hematocrit tests, which may reveal anemia, an indicator of RA.

hope this helps

karen

[AlmostThere]

I so agree with Mandysmom. Diet plays a very big part in inflamation in our bodies. Dairy is a big culprit as is wheat. If you have recently taken antibiotics you need to get your gut back in order. Antibiotics not only kill bad bacteria, but the good ones we need. Did you know we have more bacteria in our bodies than cells? Lots of probiotics needed to replace the ones the meds kill off. Yogurt only replaces maybe 5 strains needed and those mostly don't stay in the gut. Try some kefir. It can have 50-80 strains. Fermented foods are also good but watch out for too much salt.
And by gut, I mean the entire digestive tract. Bad bacteria eats the lining of our intestines which in turn causes leaky gut. Google it.

[monik7]

If you have osteoarthritis that's different from RA and is not an autoimmune disease like RA is. Seems like they should give you the test for rheumatoid factor to rule out RA.
Sandi

[snowball]

Well...went to the new Dr. yesterday....I am confused to say the least. He explained arthritis somewhat, told me I had osteoarthritis after looking at my hands. Said my swollen ankles were the result of retaining water & I should reduce my salt intake. swollen feet, toes... no comment. Said I should stay off my feet as much as possible. Limit my hand functions as much as possible especially my right hand. If I want to continue gardening I should buy the special garden tools made for people with arthritis & I should limit my time to 15 minute periods. Said the lump on my arm was no big deal & Kaiser no longer approves removal of this kind of lump... ignore it.
Did not offer any treatment but did want me to have x-rays taken of my hands. (Didn't do that as there must have been over 50 people waiting....will go back sometime this week). Dr. kept saying I have to realize that age is the factor & I will not be able to do what I've done in the past & I should accept that. He said there is no cure & didn't feel there was anything to 'control' the progress of the arthritis.....
I am totally disappointed. I had expected help to relieve the swelling so I could at least keep up with my housework. He said I should consider getting a House cleaner....Said I would never be able to clench my hands again (like when you wring out a rag or sponge etc., when cleaning)....Having fought Kaiser to get this far...I don't know what to do next. I feel like he's sort of echoing what the previous dr. said & not listening to me either. Never mentioned getting a blood test either......
Am I crazy or am I expecting too much. I am not over weight (well maybe 10#s or so), nor a couch potato, nor looking for attention but I am getting stressed about all of this (which they ask you.... do you feel safe at home ??????, are you stressed about anything ????, do you exercise at all ( dog gets her 30-45 min. walk daily)... Yep! I'm going crazy now for sure !!!!!!!!

so I am concerned as well ....I thought that it was recommended that one increase to some degree what they do as you loose more from lack of working with the say hands...I wouldn't want to sit back and not do anything either..if you don't have RA that is good....and I'm sure that the x-rays will be really good for knowing more...I shared with Kerry your post and she again said that what helped lower the swelling in her hands was the diet limiting or removing sugar, dairy, nightshades, and can't remember the other but what she said in the post under snowball...she is also going to try black cherry juice an ounce a day has heard really good reports on it as well as Turmeric capsules. hope you find the relief you need...one thing remember most Drs. rely on drugs that is their to go solution...the alternative things are in their minds unknown unproved and a hit on their income I don't do the alternative meds but would in a lot of cases if I needed help and wasn't getting it...I actually don't have anything that I've felt the need to go to the doctor for but will I'm sure some time soon
good luck with knowing what to do
sheila