I’m not one to reach out like this, so this is really difficult.
Diagnosed with RA a couple of years ago during a 4 year bout with PMR that began Jan 2015.
Was on prednisone for 2.5 years for the PMR. Have since tried Methotrexate (gave me severe mouth sores and hair loss); then Plaquenil (caused my ears to ring so badly I could barely hear); then Sulphasalizine (caused a terrible rash... apparently I’m allergic to sulpha drugs); went on to try 10mg daily Arava beginning in October, and while it seemed to be managing my RA symptoms, I again started losing a LOT of hair (even though I supplemented with folic acid and biotin). Now I’m waiting on my rheumatologist to tell me what I should try next (and I now have a 90 day supply of Arava that cost me $200 that I’ll need to toss away).
I’m married to an otherwise pretty wonderful man who has no clue. He is completely non-empathetic and responds with total silence to any comment I make about this awful illness, as if I am just a big whiner. I now try my best to say nothing at all.
I never imagined a person could feel this rotten for so long. I try to push through and do what I can and need to do. But I’m really weary of feeling so damned alone in this, and I think I just needed to speak that to someone else who might understand.
My apologies for the self-pity-rant. I hope your day has been better than mine.
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Gracie2019
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Well done you for recognising you need to offload somehow. I'm on the other side of the world in a different time zone, so way beyond my bedtime. But just wanted to say we do understand, and it's not self pity so rant away.
Hi Gracie2019, I’m sorry you’re struggling to find the meds that work for you. Unfortunately it can take some time and a lot of trial and error as no one drug suits all. I’m sure the right combination is out there for you and I hope you find it soon.
I’m glad you have found this group and please don’t apologise, there are a lot of us that have been through the same as you in the early days and we are here for you to rant or whine at and get some support.
I really do not think anyone who has not got RA can understand the pain we are in. It must be very hard for our partners to see someone they love in such pain and know that they can’t make it go away. My partner just doesn’t know what to say sometimes so maybe that’s why your partner is quiet too. I’m not my nicest when I’m in pain and that can put someone off saying something for fear of making things worse.
Do keep coming here to talk to us, I’m sure more people will come along to talk, it’s gone 11pm here so some may be trying to sleep but they’ll join in later and offer you support x
I am so glad you have expressed yourself. I understand it can be difficult. RA is not just painful and debilitating for many it's also emotionally upsetting and depressing for lots of people especially when there is a lack of support and understanding in the home. I truly think partners who are unwilling to listen, accept and acknowledge one's illness should be forced to! In sickness and in health is in the vows!
Re Sulphasalazine. I came out in a rash too. It appears the Dmards aren't suiting you at all. I truly hope your appointment with Rheumy isn't too far away. Life can be very tough at times. There are lots of members in similar situations Gracie so please stay in touch. You will find support here in whatever you wish to talk about. In the interim, your GP should be discussing options with you re your health. I think we are all guilty of just carrying on with our lives , doing as we have always done. It becomes routine and expected in some homes! With this illness it can be impossible. The fatigue grips you, the pain ( if uncontrolled) and you find yourself in a daily battle which is no good. Your husband might not like change but it's equally a huge change for you too. I hope he can work with you in adjusting things.
Thinking of you.
Xxx
🤗 🌹 we are all here for you and understand your pain. There is usually people here 24/7.
Darling Gracie. You're not whining just venting and that's why this forum is such a blessing. All here have inflammatory conditions and live with it every day. We know what it's like. Everyone needs a safety valve from time to time and I reckon people living with our conditions need one more than most. Please keep in touch. Hugs
You’ve put In words feelings that will be very familiar to people on this site. PMR is bad enough ( my mum suffered with that) but RA on top is miserable. Then we need the drugs even though noone wants to take them really, then the drugs have side effects. Then the pain which is hard for people to understand........I had a fall last week, hurt my knee and couldnt walk on it for a few days - it hurt a lot, but nothing like the pain of an inflamed rheumatoid joint .
So good luck with finding a treatment that helps, and rant on in good company here! Thanks
Hi. I agree with everyone who has replied to you and I feel only people who suffer with RA will totally understand. It does take time to get some meds that will help, it took me 5 years and I’m now on mtx and benepali which the latter has proved to be amazing. Keep strong and eventually the right meds will come your way.
No wonder you feel like you do. When I committed my situation onto text it made me feel glad to get it off my chest but in some way more exposed. Do not feel alone. All those side effects you have described are common I certainly had the hair loss and mouth problems and like you I am allergic to sulpha drugs. First of all hang in there. As I said you are absolutely not alone. Reaching out to others similar was a big help for me. I did a Challenging Arthritis course 7 years ago and there are 4 of us who still meet up as The Creaky Club! And we talk endlessly about our symptoms and how it affects our lives and how we cope.
I was extremely ill for a number of years and now I am reasonably well. Hold on, if you have a good Rheumatologist/ team you must talk to them. Would you have a local Arthritis group?
It’s tricky with partners, but I really would suggest you sit down and really talk about the way you feel about the disease you have and try to work out a plan together. This is maybe not a quick fix situation maybe your partner needs to understand this fully. I am sorry I cannot be more helpful. But you must hang on in there and you are not alone
Stress about the situation will not be doing you any favours either very easy to say but do not be so hard on yourself
My closest girlfriend has Alzheimer’s. Peace to you, as I can only imagine 💔 what your days and nights must be like in trying to care for yourself and your husband.
thank you.My sister and I support each other as her husband has alzheimers .Mine dementia.Not as bad as hers.
First of all, well done you for reaching out👏👏, we all understand what your saying so your certainly not alone! Medication can be trial and error until you find one that works so please don't despair! If you have a good rheumatologist theyll sort you out eventually.
I think any partner never totally understand what your going through as do we ourselves sometimes, and maybe his lack of empathy and silence means he just dosent know what to say or do to make things right.
Please remember your never alone now that you've joined this forum, and rant all you want cos you've got an audiece of wonderful, empathetic, people. Brighter days are round the corner. Hugs and Xxx 🤗 X
Oh Gracie2019, we specialise in pity parties on here! This is absolutely THE best place to get the sympathy and understanding you're looking for, because we're all in the same boat!
Obviously I don't know your husband, but in my experience guys hate hearing about things they can't fix, but they DO respond to clear instructions/needs. Compartmentalising can help - come on here for a moan and sympathetic understanding; talk in short code to your husband...eg: today's a really bad day, I need you to cook dinner/take out the trash, take the kids to the park (insert your particular need here).
It's painful to hear the detail of how your partner is suffering and know you can't make them better, but it's great to be told something specific that you can do.
Maybe have a conversation about the spoon theory, so that you can give him an insight into how you're doing in a shorthand way, so that in future you can use this as code such as "oh boy, I'm running out of spoons!" or "damn, just woke up and there's no spoons in the drawer!"
In the meantime, can you get a steroid shot to tide you over/give yourself a break/re-calibrate whilst working out your med scenario?
I want to thank each of you who reached out to offer words of comfort and advice. Your words of kindness mean more to me than you can imagine.
I have a new appt with my rheumatologist on Friday. Hopeful that a new med will fit my needs.
Prednisone is off the table as I have had way too much over the years. It was horrible to wean myself off it after 2.5 years and I never want to go through that again.
Thank you all again. I have ended my self-pity party for today and am determined to do “something” that will take my mind off the pain.
Gracie I can't handle steroid tablets and the tapering etc, but I find that a steroid shot in the bum is a whole different thing, with no side effects or negatives at all. Maybe worth a try to tide you over?
Thank you for your care and concern, and for the suggestion.
Unfortunately, those too have had side effects for me, I suspect largely because I have had so very many treatments over the years. Ive received numerous injections in my lower back, in my feet, my knees... and ultimately have had unpleasant side effects, so my rheumatologist prefers to steer me away from that option, as do I. Repeated/long term cortisone also puts us at greater risk for bone loss and Cushing syndrome.
In the meantime... I discovered my gym has added hot water therapy massage chairs. I just returned from having two 10 minutes sessions (one before and one after a short walk on the treadmill) and it was so very nice and relaxing.
This is a fantastic place to offload how you are feeling. We all need to let it out some way, we understand. It must be difficult for other people to understand as often we look well. Hope you can get some medication that helps. X
Hi Gracie. First a very gentle hug and to say it's all normal to feel as you are. We want our OH on our side. I think often what we go through is hard for our partners to understand especially at first. I mistook at first my husband's quiet reaction to when I was feeling bad with RA and pain, as him being disinterested. No he wasn't .. just worried and feeling helpless. I also feel like kittyj that maybe we give might sometimes give off a lil bit of a vibe that scares them when we are not feeling great. Maybe tell him when it's not a great day/time as that lets him know you feel sad it's happening, but also that you'd like his support, and you are just being quiet coping with it and not withdrawing for no reason. I think in time they get it and understand. I'm sorry that you've had severe reactions to the meds already taken but now you've tried those, can your doctor/consultant discuss with you something potentially more effective, such as looking at a biologic med which is prescribed for your condition? I'm not sure how the prescribing of meds protocol goes for your condition in your part of the world but hope can soon find something which doesn't make you react severely and relieves your PMR and you will feel so much happier when you are not in pain or unpleasant side effects. x
I've nothing more to add than what has been said above by other members, but please do not be afraid to come here for a chat and to let off some steam. We have fun too, with lots of lighthearted posts that bring relief to a bad day.
Yes many of us wore your shoes at one point. I tried the drugs and finally an RN at the ER gave me a clue. I asked how patients on these RA drugs do and how often she sees us. She said RA patients under the care of a rheumatologist are in all the time. I almost died twice once with a staph infection and another I just collapsed.
After several years of researching I now take low dose iodine, 12000 mg liposomal vitamin C, boron, 3-8 mg prednisone, Life Extension Vitamins and meloxicam. I learned from the web how to use a pendalum to check foods and body products and how to treat myself for sensitivities to food using NAET(accupuncture using fingers). I am now 10 years out, working and functional. My hands are sore sometimes when I eat the wrong foods. Your husband is likely scared covered by fear or anger. Look up NVC(Non Violent Communication) and see if you can get through to him. Worked wonders for me and communicating to my family. I am not perfect but the fear and memory of the RA drugs is worse than any of my bad days.
Your not alone 🙂 this is why this group is here ❤️
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