Rheumatoid Arthritis getting worse

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lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 5/25/2016 1:50 PM (GMT -6)   
My mother has arthritis since 2 years. When her RA factor came out positive, we had no idea how's it going to be like. Last two years have been really painful for her but relatively better. Her knee pain and right hand (which has a nodule) were effected but medicines kept them in control. Her right hand used to go through severe episodes of pain where she used to end up crying.
From last 2-3 weeks her arthritis has taken a new turn. Her left arm started hurting and was swollen, then she found out it was her shoulder blade that was getting effected. After days of terrible pain, the swelling and pain moved to the right shoulder and arm as well. Those days we spent in hell. She would scream all the time. No medicines helped and she was unable to move her both arms. She panics a lot and has low motivation for treatment. She doesn't really believe the doctors when they say she has arthritis - in a kind of denial. she just keeps wondering what's wrong with her.
Went to doctor again and he gave her deltacortril (oral steroid) for 3 days. It eased her pain but now after the 3rd day her pain is back. Her arms are less swollen but the swelling on her shoulders has increased and it's frightening her. The front of her neck also hurts and she's worried about the swelling effecting her neck as well.

She's also taking HCQ, lefora, folic acid and some other drugs. Nothing is working for her and I'm terribly stressed out.

Has anyone here tried physical therapy for the pain? Is it useful? Also, how has been your experience with the medicines and what do you do if certain medicines don't work for you?

Post Edited (voice) : 5/25/2016 2:08:12 PM (GMT-6)


Alice22
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Date Joined Jul 2015
Total Posts : 550
   Posted 5/25/2016 4:24 PM (GMT -6)   
I'm sorry to hear your mother's having such a hard time. I'm not familiar with the drugs she's taking but it sounds like she needs something else. The biologic drugs (Remicade, Enbrel, Humira and others) usually work pretty well, especially in the beginning - maybe she can ask her doctor about getting on one of those. Sometimes they combine methotrexate with that but not everyone can take that due to side effects. I also found celebrex to be helpful - that's an NSAID (non-steroidal anti-inflammatory). I went to a physical therapist when I had shoulder and neck pain but only went once for each ailment since I had to pay out of pocket. I bought a little Tens Unit that I used at home that I believe helped. It is by Omron and says "ElectroTherapy pain relief: for Muscle and Joint pain." I bought it at Walmart for about $40. Your mother's doctor needs to prescribe something else for your mom and keep trying until she finds something that works. Be persistent and if he's uncooperative find another doctor.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum).

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 541
   Posted 5/25/2016 5:45 PM (GMT -6)   
Alice is spot on. I am sorry to hear about your Mom and I hope she feels better soon, you will need to help her out by reading about the medications she has been prescribed and their effectiveness as well as side effects. What I mean by that is the general amount of time that these medications should be showing an improvement in her symptoms.

Many of these drugs can take a bit of time to kick in. For me Methotrexate took almost 5 months but once it finally started helping it was noticeable. Another thing to remember with most of these classes of drugs is that they tend to have side effects that can affect the digestive track. NSAID drugs especially so. It may benefit you to add a digestive enzyme to her foods like a good yogurt regularly or a spoonfull of kraut now and then. You can purchase digestive enzymes in pill form as well at most drug stores.

Because the immune system can adapt to these drugs it can be hit or miss as to whether or not a particular drug will be effective. I took Enbrel for many years and it gave me immense relief but then stopped working after several years. Unfortunately there is no sure fire medication which will help all people with RA so it can be time consuming to find ones that will work. I would recommend taking notes about your Mothers condition and also writing any questions you have for your Doctor out so that you can cover them on her visits. Keeping a journal will help your Doctor as well with the big picture of her illness.

As far as physical therapy goes if she can stand it then she should try it or maybe some pool therapy if she is really hurting. It has helped me to walk as much as I can even if it is not a lot to loosen up the stiffness. On the flip side of this there are times where it is simply too painful to do and I can not stand it. Like everything with RA it is very individual and not all things work for all of us because the immune system is such a unique and powerful agent.

I use a heating pad and blanket all the time to help ease pain levels. It used to help me to ice my shoulders or hands when I was younger and in great pain but that actually hurts worse now. I don't understand this and why it changed but it did. I also take hot baths as well and use some salts. Usually this is something I do when the pain is very great which makes it hard to get in and out of the tub but does seem to help relieve some of the pain for a time.

I would also not rule out looking at her diet for any foods that may be exacerbating her illness. There are some who hold the opinion that RA is caused in part by diet. I am not of this belief but I have been on elimination diets and fasting and on reintroducing certain foods I found that corn (which is in just about everything these days) and processed sugar has a very real affect on my inflammation and pain.

about the shoulder pain. I have this as well and I am just coming out of a bout with it and it is excruciating pain. For me it involves the connecting joints so my collar bone area as well where it connects to the shoulder and also the front of the chest near the throat. This will swell and is a 10 on the pain scale for me. I take hot baths and soak when this happens as well as placing a heating pad across it and I even will sleep with it (when I can sleep that is) on and it gives some relief.

If your mom is experiencing this much pain I would hope that your Doctor has prescribed something to help with the pain or has referred her to a pain clinic. It really is a horrible pain and there should not be any reason to have to suffer it without help.

I hope that your Mom feels better soon and that your anxiety is relieved as well. She is very fortunate to have someone in her life who loves her and is looking out for her.

lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 5/26/2016 5:42 AM (GMT -6)   
@Alice22, thank you very much. I'm going to take her to a doctor again and talk to him about the drugs not working. She doesn't understand that sometimes these medicines need time to start working, and I can't blame her. As you know going through such pain isn't easy.
@Don_D, I totally agree that diet matters and I'm trying to observe what kind of diet triggers her pain. The worst thing about her pain is that it's almost constant now.

lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 5/27/2016 2:53 AM (GMT -6)   
Just to update you guys. We saw the rheumatologist again yesterday. He's the one who diagnosed her RA but she refused to visit her after a couple of months and we saw him after a long time. He was pretty concerned to see the arthritis effecting her shoulders. He sent us to a physiotherapist for frozen shoulder physical therapy, but it hasn't help really. Tens unit helped the pain temporarily. It's so frustrating to see that medicines aren't working. The only thing that helped her was the steroid Deltacortril. He's given another steroid but it isn't working. The medicines he prescribed now are Aceclofenac, Betamethasonel (steroid), Tizanidine, and one for her anxiety. Nothing working by far. the problem is that she doesn't understand that the drugs can't work like magic and perhaps we'll have to wait patiently for some time and see if they suit her or not.

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 550
   Posted 5/27/2016 10:55 PM (GMT -6)   
There are so many drugs for RA now, I don't know why the doctor is only giving your mother NSAIDs and a muscle relaxer, unless her age or health prohibits her from taking the other drugs. NSAIDs alone did nothing to relieve my symptoms so I'm not surprised that they are not helping your mother. Methotrexate is a pretty standard drug that many patients with RA start off with, but also many take a biologic. I have taken Enbrel and Remicade over the past 19 years and they have helped me to be able to live a pretty normal life - both are biologic drugs. And it didn't take long at all for them to kick in. I would call the doctor and ask why he's not giving her anything stronger, and suggest that you go to another doctor for a second opinion.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum).

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 1962
   Posted 5/27/2016 11:59 PM (GMT -6)   
I think Alice has given you very good advice. I can't believe that with all the new meds that do so much at relieving pain, so many are still be left to suffer without more than a band aid for a gaping wound, so to speak.
Beth

lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 6/1/2016 2:14 AM (GMT -6)   
Thank you guys. I was also wondering why he isn't giving her such medicines. He gave her Methotrexate but to use once a week only

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/1/2016 9:50 PM (GMT -6)   
Mtx is a once a week medication.

Any more would be dangerous since it is a chemotherapy drug in higher doses.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 541
   Posted 8/8/2016 11:31 PM (GMT -6)   
JBStem1; and not covered by insurance or approved by the FDA right? What if any are the possible side effects of this treatment? Mind me asking if you know what the hold up with the FDA is? It is certainly very promising but I have to wonder why it has taken so long to get it approved and also considered by insurance companies for approval.

Now that the moral issues are no longer at play I Hope that this treatment therapy continues to be successful and move along toward wide spread adoption and approval.

/www.statnews.com/2016/02/08/fda-crackdown-stem-cell-clinics/

Post Edited (Don_D) : 8/8/2016 11:48:42 PM (GMT-6)


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9655
   Posted 8/9/2016 8:41 PM (GMT -6)   
I think water therapy is needed and would benefit her a lot, also try ginger or a 1/4 cup tart cherry juice at bedtime and only 1/4 cup to start as it can cause diarrehea if taken in large amounts. Tart Cherry juice is a natural pain remedy. It might help. Try Omega 3's and Vitamin D's, low vitamin D's can add to pain. add only 1 or 2 supplements at a time for about a month to see if they can help.
Cherries can also work in place of the juice, just don't over do it.
Also, you can checks: www.drugs.com to see what the meds are that your mom's doctor is prescribing it never hurts to check out these meds. You might also want to consider a pain management doctor, some RA doctors will refer out to a pain management doctor. I see a pain management doctor. A note to you is your mom can only have a certian amount of steroid injections a year, so you might have to wait for another one...or a steroid pill could be prescribed, but you have to consider the high side effects that come with long term steroid use and how hard it is to come off them, many of us have a love hate relationship with those steroids...
Your Mother has my prayers...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

MarleneF
New Member


Date Joined Jul 2016
Total Posts : 12
   Posted 8/10/2016 3:46 PM (GMT -6)   
If your current Doctor is not going to start her on the standard protocol for RA, you need to find a rheumatologist who will, and right away. The sooner you hit this disease hard, the less chance of it becoming severe down the road.

I know what I am speaking of, I was not given anything but prednisone the first two years, then a year on Plaquenil which did nothing, 5 years on mthx, which by itself was not enough, and now I am severe, and no combo is doing the whole job.

Start with Plaquenil, then go onto mthx. Then mthx in combo with a biologic.

As for vitamins and minerals, they are great for overall health. They do not treat RA in most people. I was an organic vegetarian before I got RA, and eating healthy did not stop me from getting RA, nor from it getting much worse. I've done every elimination diet, and nothing has come out of it. Some of us just need these harsh meds to get out of bed in the morning!
"More than that, we rejoice in our suffering, knowing that suffering produces endurance, endurance produces character and character produces hope. And hope does not disappoint, because God's love has been poured out through the Holy Spirit who has been given to us." Romans 5:3-5

Carrot top
New Member


Date Joined Feb 2017
Total Posts : 2
   Posted 2/2/2017 12:36 PM (GMT -6)   
Voice I did physical therapy for my hands and it does work. The problem I have is slowing down He want me to stop vacuuming the floors Do only light work LOL. I go to bed early and if I don't get up when I'm hurting in the morning it gets worse So I get up and start doing something to stop the pain Like dishes making my bed just anything to get me moving and it stops to where I can deal with it. I would go to my doctor for infusions and he would always ask if I really had RA and laugh because my treatment worked so good and now I hurt all over and I don't know why It's not just my hands It's all over head to feet If it's the infusion then I will have to change again. I'm on orencia infusion now and methotrexate I take folic acid,and a lot vitamins too and was doing great Tell your mother to talk to the doctor and really tell him everything l had to change doctors when we moved and it was hard to find a doctor I didn't like him because my other doctor was everything to me. I would ask him things and he seemed to make it right. This one seemed to not care. So I went to see him and just ask him if he even cared how I felt. I think I surprised him because now he does and he listens so tell her to not give up
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