Is dizziness common in chronic RA? | Arthritis Information

 

My mother is 68 years old and has been suffering from RA for the past 10 years. She has been living wit pain management medications for all this time. RA is really in advanced stage and has taken toll on her body and severely restricted her mobility. About a year back she started complaining of frequent dizziness and extreme weakness and fatigue. Doctors diagnosed that it is because her  blood haemoglobin level was below 7.5 which is causing dizziness and the weakness/fatigue, they also prescribed medications for vertigo for her dizziness. However, her haemoglobin level has come back upto 10 now. But inspite of that the dizziness is continuing on a regular basis. She just did a blood test and the results were little elevated. Her Platelet count is about 621,000 per uL and WBC count is about 15,500 /cmL. Her RBC count (3.74 millions/cubic mL), PCV (30.6%), MCH (26.74 pg) and RDW (18.2%) levels are also little out of range.

We understand that some of these levels have always been out of range historically with her, because of her chronic RA. The question I have is what might be causing the dizziness. The vertigo medication doesn't seem to help much and doctors seem to be without a clue at this moment. She also gets extreme itchiness and rashes all over her body occasionally. Topical creams don't help at all and she needs to take steroids to help with her itchy skin. Doctors mentioned that it can be linked to her RA. For controlling RA she has been taking for the last 4 years, a DMSO based medication from Mexico, which is extracted from bark of a tree. This has worked wonders for her for 4 years now to control her pain and she could do her daily chores without much side-effects. Can this dizziness be linked to this medication? PLEASE HELP, I am really worried for my mom.

Gee, I don't know but I have had problems with dizziness too. I have dizziness at times but I believe it's mainly associated with the medications not the RA its self. You said your mother is on a lot of pain medications....I think that might be the cause.I am also frequently dizzy and a little of balance. I asked the ra doctor about it and she brushed it off. I think all the medicine I'm on causes this. How could it not be. I am on remicade, methotrexate, folic acid, celebrex & synthroid. I  use darvocet only occasionally when I'm having a really bad day. The doctor blamed the darvocet but i average 1 ot 2 a week.

The problem with medicines, especially supplements, from Mexico is that you can never be 100% sure what is in them.  Do her doctors know she is taking that and where she gets it from? When you talk rash and other weird symptoms that would be the first place I would look Actually, my mother is taking Darvocet (DMSO based medication from Mexico) twice or thrice a day and a painkiller once a day. That's pretty much the medications she is on, for RA. Other than this, she takes the Vertigo medication and some antacid to reduce her acidity level.

So as you can see Darvocet is her primary and only RA medication. She has been doing pretty well for the last 4 years with this and the dizziness began happening only about year back, accompanied with severe weakness and fatigue, which is preventing her from carrying out even daily chores.  Has anyone on this forum been using Darvocet for a long time? How effective has that been for you? Any side-effects you suffered?

My Dad was on Davocet and had a baaaaad reaction including hallucinations.  The rash sounds like she's reacting to something.  This is common with some meds.  I use Minocin for my RA (an antibiotic) and that causes dizziness in people but it goes away in a couple of months.  It also can cause itchiness in the beginning too.  So...from what you describe...it sounds like she's reacting to the Darvocet. P.S.  And if all she's been on for RA is that for the last 10 years, get her another doc! I googled for Darvocet side-effects and here http://www.drugs.com/darvocet.html is a very good link which listed severe as well as mild side-effects of Darvocet. Looks like my mother has exhibited almost all the mild side-effects.  The site also mentions that Darvocet can be addictive and hence stopping at once may not be a good idea. So we will work on a plan to reduce and eventually eliminate her taking Darvocet. What is a good alternative she can try? Before Darvocet, she never really found a good pain management medication for RA.  There are multiple pain management meds and they should be prescribed based on her history, tolerance, level of pain, mental status, etc.  Only her physicians can recommend the proper pain meds.  We're all over the board with pain meds.  Some of us take Tramadol, some take Lortabs, others use over the counter pain relievers.  Darvocet isn't usually one of the first line pain meds used.  Not sure why she was prescribed Darvocet.  Does she live in Mexico or is she being treated in Mexico?  Also DMSO has quite a history of side effects.  I hope her doctors know that's she's using it.   You need to work with her doctors to wean her off pain meds and if her RA is painful there needs to be a plan of action for another pain med.  Lindyok I'm concfused...darvocet is not DMSO based..its a narcotic based pain medication combining  Propoxyphene and Tylenol nad requires a prescription to obtain in the US.  DMSO is a supplement sold OTC and its not one of the safer ones.  So which is your mother on....of course neither is designed to treat the RA so her disease can be progressing.  And as I said earlier medicine from Mexico can  always be suspect. I think it's been said; but I'll say it again. Your Mother isn't being treated for RA.....she's obviously being treated for pain. Maybe if they treated her RA she wouldn't have such a problem with pain. RA is the most painful when it isn't under control.....and after years of untreated RA has damaged her joint. I have never heard of Dorvasol or Tramadol Hydrochloride. Is the Dorvasol tramadol hydrochloride is just the long name of tramadol (brand name Ultram).  Never heard of Dorvasol... is it plain old DMSO, or are there drugs dissolved in the DMSO? I would certainly suspect the darvolsol..but before she stops it cold turkey she needs to take it to a lab and have it analyzed.  Many of these Mexican supplemental arthrtitis drugs have a habit of containing prednisone or other steroid based medications and it may have to be stopped carefully, but if you want my opinion yes its time to stop this mystery drug. Dorvasol is a DMSO based medication which is sold ONLY in Mexico. The doctor in Mexico is a specialist in RA and this medication has worked wonders for many RA patients. In fact we found out about it only from a RA forum, few years back and decided to give it a try. It worked really well, to the extent that my mom could stop taking her tramadol completely and replace it with Dorvasol and had no noticeable side-effects plus her mobility increased siginificantly and she was able to walk, move around quite a bit after starting with Dorvasol (earlier she was practically confied to her bed with limited limb movement) I'm concerned about what's in the Dorvasol.  DMSO is an excellent vehicle to get drugs into the system via the skin.  Steroids, opiates, NSAIDs, you name it... all of these things can make you feel MUCH better, but at what cost?  Her doctors really need to evaluate the ingredients of the Dorvasol. As far as I know, it's just DMSO (not sure if Dorvasol  contains anything else)  My understanding was DMSO has pain relieving effects. I have been trying to get in touch with the doctor from Mexico, to get these answers. But so far no luck. That's why thought of checking on the forum in the meantime for similar experiences with DMSO. thanks!Sometimes i get dizzy. Why? Don't really know? Sometimes i have ear problems. But sometimes i just don't have a clue. But i have been less dizzy scince being on prednisone. Sometimes i get full vertigo. Which is a bit different then just dizzy.

the thing is with mexican pharmacies, especially ones that may cater to americans is that what they say is in products is not always what you get.  Non pharmaceutical arthritis meds from Mexico (and dmso is not pharmaceutical) often contain steroids and other pain relievers.  Just because it claims to be dmso it does not mean that is what you get.

Get your mother to an independent rheumatologist and get a 2nd opinion...and get rid of the mexican drugs.  And dizziness is listed as a side effect of it

I don't understand why she has been treated only for pain for the last 10 years.  She needs to be on a DMARD at least (Disease Modifying Arthritis Drug) to stop the progression of the RA.  Pain is a symptom of the disease and you treat the disease first.

We changed a number of rheumatologists when the disease was first diagnosed 10 years back. None of the treatment had much effect. So around 4 years back we heard about this doctor from Mexico on a RA forum and heard quite a few success stories about the DMSO based medication he was prescribing. After speaking with him we decided to give it a try, as at that point none of the medications she had tried earlier were yielding any results. DMSO helped her immediately, to control the pain and most importantly her movement was restored. So we were really happy. But for the past one year or more, she has been having these bouts of dizziness. The doctors thought this might be because of gall stones. However that doesn't seem to be the case. Currently her RA pain seems to be in control (because of Tramadol and DMSO) but this dizziness is recurring at regular intervals and making her really uncomfortable and nervous. We have started search for a new rheumatologist and a new medication course. Another thing which really helped her was accupressue. Unfortunately her accupressurist had to leave country, so we have not been able to continue on that for a while now.....

I was able to finally contact the Rheumatologist in Mexico (who prescribed Dorvasol 4 years back). He said that Dorvasol contains pure DMSO, NO STEROIDS. It is an anti-inflammation RA drug, which slows down RA a bit and helps with pain by reducing the inflamation. He strongly suggested to stop all medications (including Tramadol, Dorvasol, Vertigo medication, high blood pressure medications) which my mother is currently taking and start afresh with new medications for RA and pain management. His diagnosis was that the spells of dizziness and rashes on skin, are mostly because of allergic reaction to one of the many meds my mom is taking. So we have stopped all her meds except Tramadol, as the pain is really excruciating. We will anyways do the CT scan to rule out any issues in nervous system. Finding a new medication for RA and pain management, which suits my mother, is going to be a challenge, but we will work with a new rheumatologist and hopefully will be able to get something quickly for my mom. I REALLY appreciate all the inputs you all have provided. God bless all of you in dealing with RA. I was really moved by the support all of you provided and it felt like a close-knit cyber-community....talk to her local doctors before stopping the meds cold turkey..some may require weaning down.  Also watch for any weird reactions just cause this dr says that all the dorvasol has in it is DMSO doesn't mean its so.  My mom has stopped taking all her meds, except Tramadol. But apparently she is going through such a bad flare up, that all her joints are extremely painful and stiff and she has lost complete mobility and is practically bed ridden now. The pains are really bad and excruciating. So doctors have now prescribed Paracetamol 650mg + Codeine Phosphate 30mg tablets to her. She just got started with this tablet today. We are praying that the Codeine helps with her pain.  Is anybody using Paracetamol Codeine combination for pain relief? I know this is not a good long term plan, but we just needed something to get her through this pain till her RA doctor is consulted and prescribes something for the longer term. Guys,

Just an update about my mom. You all have been such a supportive group that I thought of updating you with my mom's progress since her RA flared up big time and literally crippled her.

So finally we managed to get referral for a good RA doc. The doc has asked my mom to discontinue the use of Tramadol, Paracetamol Codeine and other analgesic pain-killer she has been taking. Now she has been prescribed the following

Prednisone 5mg once a day for 3 weeks
Folic Acid 2.5mg two tablets once a week
Some more folic acid tablets - once a day for 3 weeks
Combiflam Ibuprofen 400mg and Paracetamol 325mg combination - once a day
Calcium and Vitamin D tablets once a day for 3 weeks
Flucamazole 150mg for first 5 days only, followed by once a week for 3 weeks
Allegra for skin rash/hives/itchy skin/acne

We are praying that this really gives her some much needed relief.  The doctor has called for a follow-up visit after 3 weeks, when he might prescribe something new or continue, depending on my mom's condition.

As per the doc, my mom's condition is quite critical as RA is in it's advanced stage now. Has anybody on similar treatment in advanced stage of RA? Any bad side-effects to be aware of and be careful about?

Million thanks for all the support you have provided!


The prednisone will probably give the most immediate relief.  Does mom have liver/kidney issues?  I ask because 400mg ibuprofen and 325mg acetaminophen once per day is a pretty low dose in a normal person.  I would at least expect to see 400mg/625mg three times per day.  The 400mg ibuprofen will probably buy her several hours of moderate pain relief, but 325mg acetaminophen is like taking a sugar pill. The doctor just found out some issues with lever, so may be that's why the low dose of acitaminophen.  Also we have observed that though she has been in a very controlled environment (primarily at home, bed ridden) and rarely gets in contact with others or outside, she has been repeatedly catching some urine infection. This is her third one in less than 2 months. She takes antibiotics which controls and gets rid of the infection, but it comes back in little while. Anybody has seen this?

Also main question, as she is very frail, underweight and is barely moving, will Presnodyne cause any other immediate/long-term side-effects, which we should be aware of?

thanks

frankly on severe RA that treatment is like putting a bandaid on a ruptured artery.  Even the dose of prednisone is really low to essentially be the only RA med.  The ibuprofen is at a dose that it will do little or nothing for the inflammation.

I do hope she sees some release from her pain. And once she feels better she gets a really good rheumatologist to provide her with a 2nd opinion

[QUOTE=buckeye]

frankly on severe RA that treatment is like putting a bandaid on a ruptured artery.  Even the dose of prednisone is really low to essentially be the only RA med.  The ibuprofen is at a dose that it will do little or nothing for the inflammation.

I do hope she sees some release from her pain. And once she feels better she gets a really good rheumatologist to provide her with a 2nd opinion

[/QUOTE]

If she's underweight and has poor liver/kidney function, those dosages might help; her body might not be able to handle larger dosages, and her liver/kidneys might not break down/excrete the drugs like a healthy person would.  My brother, who is suffering from alcoholic liver failure, requires only small doses of many of his medications because they just don't get broken down.  If he took normal doses, he'd quickly become toxic.  But I agree, it's not a long-term fix.  Just short-term comfort measures.
Yes, that's correct. This treatment has been prescribed by the Rheumatologist only for 3 weeks. She has asked for a follow-up after 3 weeks when she will decide on the long-term course of action. thanks again for being my sounding board! [QUOTE=Lovie] I have dizziness at times but I believe it's mainly associated with the medications not the RA its self. You said your mother is on a lot of pain medications....I think that might be the cause.[/QUOTE]

I totally agree.Yes, all the dizziness stopped for few days when she only took Prednisone (5mg/day) + Methotrexate (5 mg/week) + Combiflam (thrice a day) and completely stopped the Tradmadol (Ibuprofen 400mg + Paracetamol 325mg thrice a day) she was taking. However,
the pain flared up again and the combiflam barely helped with the pain. So she had to start the Tramadol, which temporarily gives good relief with the pain, however the dizziness kicked in again.
So it looks like Tramadol is what is causing the spells of
dizziness.

The issue is we are having a tough time finding a good pain
management medication to replace Tramadol (which is equally effective in stopping the pain), so that the dizziness
can be stopped? Any suggestions on a good pain reliever (with minimal side-effects? indi, sorry I'm late to the thread.  You and your mom have been through a lot!  I'm glad you've got a rheumatologist re-evaluating her treatment now.

 

As for the UTI's, you may already know that cranberry juice (or even the extract in pill form) can work wonders in keeping them away.  However given all that is going on with your mother, I would ask her doctor before adding anything at all.

 

As for the side effects of the prednisone, your mother's not on a large dose so I don't think you will see anything significant.  It can cause weight gain (which might be good in your mother's case), insomnia and sometimes mood changes (hyper or irritable). Long term it can cause signficiant side effects, including osteoporosis and eye problems, but again, at a low dosage that is not as likely.

 

I'm not sure what to tell you about pain relievers.  If she's having liver issues, many of the pain relievers may be a problem.  What does the doctor say?  The only thing I can suggest is to try non-medication pain relief methods, such as cold or heat packs.

Thanks so much for the information! Her condition has really worsened in short span of 3-4 weeks. We all and more importantly she herself is having a tough time coming to terms with her current bed-ridden condition. She seems to have gone into depression and feels that she is going to be like this, bed-ridden, for a long time and hence a dependent on her near and dears. We all are giving her hope.

Everyday has been a challenge lately.  If she complains of extreme joint pains, we bump up her pain management (anti-inflamatory) medicines, that gives her relief, but some times tend to flare up the itchiness of the skin or the dizziness spells increase significantly. If we bump up the itchiness steroidal medication, then also we noticed dizzineess increases. To add to the woes, she has lost her appetite completely and is not eating much. So her haemoglobin level has dropped significantly. We just put her on IV, so she gets some much needed body strength.  This has been the toughest phase of her 10 year old RA disease. Has anybody experienced such extreme attach of RA? If yes, how long does it take to get back to normalcy? Is there light at the end of the tunnel? We are all worried sick for her and can't see her suffer like this ....... Once again many thanks for being patient listeners.



are they not seeing the forest for the trees..  are they so concentrating on the RA that other issues aren't being looked out.  If I had dropping hemoglobin coupled with on going dizziness I would be looking to get scoped to check for internal bleeding. Yes, the doctors did consider internal bleeding as a possible cause of repeated drop in her hemoglobin level because we have seen that her hemoglobin is dropping from 10 to about 7-8 level every 2-6 months. So far no visible blood in her stool or other symptoms. However, she is a very poor eater (as a result of her lack of appetite and her dental cavities woes), that's why so far they are thinking the drop in hemoglobin might be because anemia than a more serious internal bleeding issue. So every time the hemoglobin level drops, she is been given iron injections to bump up the level. That seem to help her, but the level drops again after sustaining for about 4-6 months. Her current blood report is indicating elevated levels of White Blood Cells (possibly because of her UTI) and also elevated levels of platelets, which is under investigation.



Hello folks,

I am back after spending a month with my mom. She is doing much better now than the condition she was in about month and half back. Here is what we have tried so far :

1. We stopper all her current meds including DMSO and a myriad of meds she was on
2. She is currently taking Prednisolone 5 mg( steroids based med) for her RA once a day
3. For her pain management, she is taking Tramadol twice a day (combiflam didn't help much)
4. Some calcium supplements
5. Some folic acid supplements
6. We consulted a haematologist (doc specializing in blood disorders) for her recurrent low levels of haemoglobin. He has prescribed Erythropotein hormone shots (strength 10,000 once a week) till her haemoglobin level rises from current 8.5 to about 11mg
7. She is also taking Methotrexate 5mg once a week (twice in the day)

My mom has started taking short walks now. Her pain is under control. The skin rashes/itchy skin seem to have disappeared (may be the prednisolone helped here) Her dizziness has consistently continued though also there is still extreme fatigue and lack of physical strength. Currently we are suspecting vertigo and low blood pressure as the causes of consistent dizziness. We are just trying our best to keep a close eye on her diet and improved liquid intakes. Hopefully that alongwith the Erythropotein shots (for improved haemoglobin) might help her gain some physical strength and help with the fatigue. Let's see how it goes. But for now, we are happy about her condition and working on getting the dizziness under control and help her get some physical strength, so she can lead as normal a life as possible.  I felt obliged to give you all an update as you have been very helpful sharing your experiences.

many thanks,
indi


Thanks for the update! sorry she still suffers with vertigo- a real drag... but glad she's doing good in the other areas!I just saw this post.  I have been having vertigo and some dizziness and wondered if it is from the enbrel I just started.  I am so gald I am not alone.
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