Thursday, September 18, 2014

Friday, January 01, 2010 mandi, Community Member, asks

Q: both knees swollen for 4 month now on 15mg of methatrexate and doctor just up my dose of pred to 30.  Left knee swelled up. Both knees were severely swollen when i first saw rheumy, but the swellling went down withp pred.  Been on meth for 3 weeks now, but no relief.  All the blood test are coming back negative! frustrating. NO other joint prob.  Could i be alergic to something?  who should i see for this?

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Answers (1)
Lene Andersen, Health Guide
1/ 4/10 11:36am

Approximately 20% of people living with RA are what is called seronegative - this means that their RA factor is negative and can, in some cases, severely delay getting treatment, as not all family doctors are aware of this and therefore don't refer to a rheumatologist. As well, it's quite common for RA's to sort of play hide and seek in the beginning and be difficult to diagnose. However, the good news for you is that you do have a rheumatologist and you are on medication for RA. It's quite common for methotrexate to take approximately 6-8 weeks to fully kick in, so it might be another couple of weeks before you begin to see significant changes. In the meantime, prednisone can help you bridge the gap, so speak to your doctor about going back on it or if you are still taking prednisone, perhaps increasing the dose. You should also talk to your doctor about getting a prescription for painkillers or anti-inflammatories to help you control your pain.


Although it is possible that there's something else going on, it's quite likely that you do have RA - blood tests should be used to confirm an already existing diagnoses made based on clinical symptoms, your history and possibly x-rays (we have great article about blood tests and what they mean that may help you). However, I would suggest that you have a more detailed conversation with your rheumatologist regarding your questions and concerns - remember that you doctor is there to help you and that includes giving you the information you need. You may want to check out a post I wrote about being a good advocate for yourself to help you with some tips on how to approach your doctor. It's also a good idea to read as much information as you can about your disease, as it will help you understand what's going on and feel more in control - check out our section for the newly diagnosed, as well as our area about the basics of RA.


I can also highly recommend a book called The First Year with Rheumatoid Arthritis - it's a terrific and comprehensive guide to live well with this disease (that link takes you to a review of the book and an interview with it's author). And keep coming back here - we have terrific community of very supportive users - one of the keys to getting a handle on life with a chronic diseases to find a community of people who know exactly what you're going through.


mandi, Community Member
1/ 4/10 5:47pm

Hi Lene....thank you for your response.  Well, I am 32 year old and my left knee swelled up in Aug. 2009.  Went to 3 diff ortho doc, but then my right knee swelled up.  Was reffered to Rhuemy. Both knees were drained and the white cell count is 26000!  They have been swollen since.  The swelling went down a little bit, but I cannot walk normaly.  I am on 750mg of relafin, 20mg of pred. and 15mg of methtrex.  Ra factor was neg as well as all the other panels of tests.  People are telling me that it might be my diet.  I have been swallowing a clove of garlic with water and started adding more ginger to my diet.  Just started having ginger tea as well.  I am looking for home remedies as I have heard that might help me.  Do you know of any? afraid of all the side affects from these meds im taking.  I have feeling that my face is starting to swell up.  Just scared..:(

Lene Andersen, Health Guide
1/11/10 12:13pm

Living with a chronic illness can be scary at times and having to face the side effects of medications that are necessary to control your RA can be unnerving, as well. RA can be difficult to pin down in the beginning and up to 20% of people with RA are what is called seronegative (we hadve a great post on blood tests that can explain more about your lab results). It's important to find a doctor that understands that lab results are used as a confirming test, with the diagnosis already having been made by examination, history symptoms, etc. Some doctors rely only on blood test and it can mean you don't get treated as quickly as you need to. Methotrexate can take up to 6-8 weeks to really kick in, so hopefully that will start to help more soon, but if it doesn't, speak to you rheumatologist about treatment options.


Diet can be somewhat effective in helping to manage RA symptoms, but it will not suppress it the way RA meds do. And it is important to get it suppressed or you risk permanent damage to joints that can affect your future mobility. Check out these links about the Mediterranean diet, vitamin D., cod liver oil and tart cherries. You may also want to consult a licensed naturopathic doctor for  knowledgeable and qualified advice in supplements that may help support your overall health.


colleen B, Community Member
12/ 7/10 8:17pm

I am a 59 year woman.  Prior to 8/2009, I was totally healthy. I was diagnosed with PMR in Sept 2009, I woke up with it. I came off prednisone totally in 7/2010. I had shoulder surgery 8/30/2010 for a 90%torn rotator cuff and need surgery on my other shoulder. My knees have been swollen for at least the past six months. My doctor sent me to a Rheumatologist. I had been tested for all the diseases that could  cause swelling prior to seeing the rheumatologist. He re-tested me for RA   and it was negative as it was before. My sed rate was 68 then and more recently in the 90s. I am now on methotrexate for six weeks. My doctor doubled the dose (6mg over 2 days)on week 5 so I have been on the double dose for two weeks. I have now completed week six. Both knees remain swollen and my right knee is very swollen. I am 102 lbs so I have lost 38 lbs. I drink ensure an eat so I can maintain but really want to gain weight. It is hard to get around and I am often frustrated,angry and depressed and at times manage to be my old positive self. My partner is so strong and supportive which is a big help. My shoulder rehab is less painful than my knees. Should I get a second opinion or be more patient. I would appreciate your thoughts on this. Thanks much.

Lene Andersen, Health Guide
12/ 8/10 3:15pm

Methotrexate usually takes a couple of months to kick in, so it may not be working yet - you may want to consider giving it another 2-3 weeks. That said, did your rheumatologist rely on blood tests as a factor in not diagnosed you with RA? If so, you definitely need a second opinion, as about 30% of people with RA are seronegative, i.e. their rheumatoid factor doesn't indicate RA. As well, a good rheumatologist can make diagnosis of RA based on medical history and physical exam, relying much less - sometimes, even to the point of ignoring - the results of blood tests.


Given that your pain is causing you to lose that much weight, I would recommend that you see your family doctor and ask for help. Whether it's help in giving you an emergency referral to another rheumatologist, a prescription for better painkillers, a referral to a dietitian, a physical to make sure nothing else is going on... Well, you get the picture. Clearly, you're in a situation that you find alarming and it sounds to me as if it's time that you have a strategic meltdown in your family doctor's office. Much as I hate crying in front of others, sometimes it can be very helpful in making medical professionals understand just how bad things are.


Please let us know how things go?


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By mandi, Community Member— Last Modified: 12/08/10, First Published: 01/01/10