Saturday, September 04, 2010 Denise asks

Q: No RA factors however damage to joint rx'd during ultra sound of finger. 2 years of meds including shots prednisone and now infusions. Frustrated and can't seem to come off of prednisone. Is this RA?

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Answers (5)
Brad, Health Guide
9/ 4/10 9:01pm

Hi Denise,

It could be RA, many times it does not show in bloodwork, I myself am Serum Negative. What kind of infusions do you take? Were you dxd with RA? RA generally starts in the small joints of the fingers or toes, but can start anywhere. It is usually on both sides of the body as well. I am on my second year of the Pred myself, its no fun, but its better than the pain I am in if I am off it. Hope you get some relief soon.

 

Brad

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9/ 8/10 9:35pm

Brad,

I have been on Humira, Enbrel and now getting Orencia infusions every four weeks.  The ultra sound of the fingers indicated joint damage and inflammation.  Other tests have shown "hot spots" of inflammation as well.  Pain is in neck, shoulders, elbows, knees, toes almost everywhere and on both sides.  I agree with you about the pain off Pred then on.  Dr tries to wean me off and I just cant stand the pain.  Good news is I had injections three weeks ago of PRP (Plasma Rich Platelets) injected into my heels for Planter Fasciitis.  Expected to work in 3-6 months. Thanks for your input Brad.

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9/ 4/10 1:57pm

Hey Denise

Is this the only joint with pain? It is possible to have RA even though it doesn't show up in lab work, but RA normally involves multiple joints. How did the ultrasound damage your joint? That sounds very strange.

Sorry I don't have more of an answer but some more details may help.

Chuck

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9/ 8/10 9:33pm

Chuck,

No, gosh I have joint pain through out my body. The ultra sound of the fingers indicated joint damage and inflammation.  Other tests have shown "hot spots" of inflammation as well.  Pain is in neck, shoulders, elbows, knees, toes almost everywhere and on both sides. I have taken Metho, Enbril, Humira and now on Orencia every four weeks.  Can't seem to get off the Pred (2 years) though, to unbearable.  Muscle spasms in legs, back and arms.  Doctor will comment sometimes that it is possible to have more than one health problem at a time.  However, I am not sure I need to be treated for RA, if blood is not RA pos and I don't respond well to any of the meds then maybe it "just not RA".   Thanks for your feed back.

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9/ 7/10 5:07pm

When you were prescribed medication you should have been given a diagnoses of some sorts.  shots and Infusion meds are a big deal and a diagnoses is warranted,  Not having a RA factor doesn't mean you don't have RA or some sort of ailment. There are many people who have sero negative RA.

You are entitled to see you medical records and all the reports from your xrays and mri's.

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9/ 8/10 9:38pm

Ronie,

 

Yes, I have been keeping copies of all my results.  Just no RA pos however damage to joint in finger due to inflammation.  Hot spots through out my body.

I agree these shots and infusion are a big deal and costly.  Thanks for your input.

 

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9/ 9/10 2:00pm

I wonder if your doctors are not taking into consideration a dx's of Erosive Inflammatory Arthritis.  All the same symptoms of RA but no factor and is usually treated similarly. 

Just a thought.

Three years is a long time to be on meds and starting to get infusions when they have not given you a complete diagnoses and have not been able to get it all under control.  

We understand completely your frustration.  It is not that we are all more laid back with our symptoms.  For us, old timers, we have grown to understand that pain, frustration, anger and depression are as much a part of us now as our RA is.  We still go through it all but we crawl into our little hole for a while.  When the coast is clear and we feel like we can be civil to ourselves and our loved ones, we slither back out. 

A lot of your frustration right now is not only stemming from your pain but also from not knowing what is going on.  Because you don't have a diagnoses, you can't just research and ask what it is you are going through and why.  You don't have a starting point to be able to heal mentally and emotionally. 

 

The meds are not killing you.  They are there to help you and us all.  But pop you docs in the nose and let them know you need a straight answer as to why they have you on infusions.  Hell, use your anger to make them aware that you don't get it and you need to know.  Heck anyone can do internet research but they need to tell you the words to look up. 

 

We are here to listen whenever you need us.

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9/ 9/10 11:11pm

Thanks Ronie, I wish I could crawl in a hole for a long time.  However, my kids, full time job, husband and just plain life won't let me do that.  Trust me I try anytime I can.  Dr knows its some type of Inflammatory Arthritis,  I guess I don't need a name or diagnosis as much as I need SOMETHING to work other than Pred for the rest of my life.  I'm waiting for my normal blood test results from Dr sometime this week.  I plan to tell him how I really feel, scream, cry and really let him know what its like and then I get in front of him and his calming personallity and my angst looses its stregnth.  So, I plan to give it to him over the phone this week, I want to go off of everything I am so frustrated.  If I do that (because I have before) the pain gets so bad my sternum hurts when I breathe.  So, thanks for listening to me BLAB on and on.  Stay well.

Denise

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Lene Andersen, Health Guide
9/ 8/10 11:51am

as has been mentioned already, approximately 20% of people living with RA are seronegative, which means they test negative for RA (we have a great post about blood tests that can give you more information).

 

I'm assuming you have a rheumatologist, a diagnosis of RA and that infusions of one of the Biologics? if you could share some more information about your situation, it would be easier to advise you, but in general, it can be pretty difficult get off prednisone. If decreasing prednisone increases your symptoms of RA (pain, stiffness, swelling), then you should talk to your doctor about treatment options, as it's possible your current medication (I'm assuming that the infusion is a biologic medication for RA) is not working well. you may have to switch to another medication or try combination therapy of two or more different DMARDs (disease modifying antirheumatic drugs like methotrexate, Arava and the Biologics).

 

 

 

 

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9/ 8/10 9:48pm

Lene,

Three yrs ago Dr was treating me for Fibro without success.  Pain never got better on meds.  I insisted something else was going on and nothing ever moved this Dr off Fibro.  So, I left him and during 2nd visit of new Rheumy they did an ultra sound of my fingers. This is when they said my fingers showed damage due to inflammation, however never had any RA pos blood test results.  Started on oral meds including Metho, bad reaction to that and went off quickly.  Oral meds failed moved to Humira, then Enbril and now on Orencia every four weeks, along with muscle relaxers, Gabapentin (sp sorry), and Pred.  I cant get off of Pred I am in sooo much pain.  I think they are missing something and want off of all of these meds.  I feel like they are all poison.  Sorry for the short temper, everyone on these boards sound so patient most of the time and I can tell you I no longer am.  Thanks for the input!

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9/ 9/10 7:56am

I can definitely sympathize with your frustration! Since February of this year I have been dealing with M.S. symptoms. I have not been officially diagnosed yet though so it is nerve racking. In May my joints on the base of fingers started swelling and became extremely painful. Over the past few months more and more joints have become painful, stiff and slightly swollen. My frustration with doctors has kept me from going to an RA doctor. I finally decided that the pain is becoming unbearable so I made an appointment for this Monday. I am very nervous that the doctor will say " Sorry but I can't find anything so just take aspirin" That is what I hear all the time. I have been told that with my possible M.S. that it takes a very long time for a diagnosis sometimes. I am very irritated and in a lot of pain. I am sorry for whining but I wanted you to know you are not alone in your lack of patience.

Dan

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9/ 9/10 10:58pm

Dan,

So sorry to hear about the MS symptoms.  What is happening with you that they are taking you down this path?  OMG just aspirin?  Sorry if you are repeating your self but have you been diagnosed with RA and now they are looking into MS?  I so understand frustration, pain and irritation.  I am 42 ,work full time, have two children, a husband and walk around like the living dead.  Life doesn't let you slow down and rest, at least not mine... So whine away my friend - whine away! Let me know what the Dr's say on Monday.  Have them give you something to help the swelling and that should help your pain.

Denise

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Lene Andersen, Health Guide
9/ 9/10 11:00am

Don't worry about the temper - pain makes you anxious, depressed and really, really mad. I can certainly understand your frustration -it sounds as if you're up against a wall. I have a few suggestions.

 

First, if you think I'm missing something, I'd recommend you go back to your family doctor and talk to them about starting over in the testing process. You can also talk to your rheumatologist about whether it's possible you have another autoimmune disease instead of RA. I'm a big believer in trusting your instincts and if yours are telling you something else is happening, pursue that.

Is your pain primarily in the muscles or your joints? Although RA can affect muscles and tendons, as well as joints, usually, if it's fibro, your muscles with be the ones that hurt the most and if it's RA, it's your joints. However, it's also possible that you have both. Check out the fibromyalgia area on our Chronic Pain site for more information to see if it rings any bells. If you do have fibro, medication alone will not be enough. I have fibro and RA and sometimes I'm not sure which of them is causing me pain, but if I take painkillers and they don't do much, it's usually fibro. Fibromyalgia needs a toolbox of pain management tools and medications only be the beginning - muscle relaxants can be helpful, nerve pain medication such as gabapentin can be helpful, but most people use Lyrica instead, so you may want to try that. Meditation is also good - check out an audio program called Mindfulness for Beginners to learn how - and staying warm is essential, as cold makes your muscles things up. That said, since you have damage in your joints, clearly you don't only have just fibro, but the question is whether it's RA. Have you considered a second opinion? Sometimes a new pair of eyes can see things in a different light. As well, sometimes it can take a long time to find a medication that works for you, as some cases of RA are really stubborn. Since your pain increases when you go off prednisone, it seems to be an indication that you have some sort of inflammatory thing going on that may very well be RA and it sounds as if is not controlled well, which means you may not have found a medication that works for you yet. I would recommend you go back to rheumatologist and start asking questions about why it's not working, what kind of options you have for treatment, etc.

 

You don't mention whether you're in any painkillers other than gabapentin and muscle relaxants, so I'm assuming you're not? Trying one of the anti-inflammatories like Celebrex, Mobic or naproxen might be helpful and you may want to ask for referral to a pain specialist. It's also possible that it is pain from the damage in your joints and that wouldn't be addressed by muscle relaxants, so you need a different kind of pain medication However, the first step to managing your pain is to get your RA (or whatever it is) under control. Which brings me the toxicity issue. We are brought up to believe that taking medication as bad, that the chemicals will mess with our system and of course there are side effects (see my post on managing side effects), but if you do have a disease like RA, medications are your friend (of course, provided you can find one that works for you). You need to protect your body from the damage that is caused by RA, as it will protect your future mobility.

 

That's a lot of very vague suggestions, but I hope I've given you some ideas on the next step.

 

Please let us know how things go?

 

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5/27/11 9:47pm

Have you been to a rhuematologist? They have helped my husband through some tough times, but still there's medications including prednisone that he takes on a daily basis, as well as infusions. Currently trying to find the right medicine to take the pain away. I hope my answer has helped some.

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By Denise— Last Modified: 05/27/11, First Published: 09/04/10