To contact Rheumatologist or not

[Summerrain14]

In the last six weeks I have been feeling pretty ill. My pain levels are particularly bad. Been to see GP today who has been very supportive. They have advised contacting rheumatologist as I have open access. We have no rheumatology helpline or nurse we can contact. I have been prescribed stronger pain relief meds today. Routine bloods done today for my RD. They are looking really good which is great but now making me think should I be contacting my rheumatologist or not. Any advice?

[Hidden]

I would contact your Rheumatologist any kind of flare they need to know about and keep record of

[Summerrain14 in reply to Hidden]

Thanks for your advice, I really appreciate it. Can it be classed as a flare If my bloods are good?

[Hidden in reply to Summerrain14]

I’m s-negative and I can have pain stiffness swelling and my bloods are fine. Last year I could barely walk or use my hands and my bloods only showed minimal inflammation. Other people have very small symptoms but bloods show significant inflammation. Oh the complexities of RD🙄

[Summerrain14 in reply to Hidden]

Thanks so much for clarifying this for me. I am s negative too. Just recently diagnosed and won’t deny I am not coping too well since diagnosis in July last year. I know just how lucky I am that my GP and rheumatologist have been very supportive but the daily pain is really affecting my mood and wellbeing. You have given me the confidence to contact my rheumatologist. A massive thank you. This RD is very complex isn’t it?

[Summerrain14 in reply to Hidden]

Just wanted to say a massive thank you to you for replying to me. Your messages gave me to the confidence to be proactive today and have an appointment with my rheumatology nurse on Friday morning and my consultant is in clinic too that morning. How lucky was I? A massive heartfelt thank you once again x

[Hidden in reply to Summerrain14]

Fab news let us know how it goes x

[Summerrain14 in reply to Hidden]

Will do. x

[allanah]

If in doubt and your in pain then yes I personally would contact them .

As you know bloods dontvtell all the story xx good luck

[Summerrain14 in reply to allanah]

Thanks so much. I just worry about wasting people’s time with my woos when I appreciate that there are people dealing with a lot more than me.

I’m still getting my head around this RD as a new diagnosis. So hard to know what is causing the issues sometimes as have Lupus and Raynaud’s and now RD. xx

[allanah in reply to Summerrain14]

Well if your doc is any good he should be able to advise you as RD lupus and raynsuds all have complications so good luck. Go talk and see what they say ..good luck x

[Summerrain14 in reply to allanah]

Thanks so much. I’ll contact my rheumatologist tomorrow via the medical secretary. x

[allanah in reply to Summerrain14]

Yes in this game you sorta know your own body and to be your own advocate!!

[Summerrain14 in reply to allanah]

I am such a rubbish advocate for myself which surprises people that know me as I am an advocate daily with being the link between health care and my patients local communities. 😊

[allanah in reply to Summerrain14]

Ha ha ha xxxtake a bot of your own advice !!

[Summerrain14 in reply to allanah]

It is the case of do as I say and not as I do with me. I will try harder though 😊

[Hidden in reply to Summerrain14]

I use to be like you not wanting to waste people’s time or just putting up with it. I’m so over that now. The people on here showed me how to be proactive and use their knowledge. Being in pain is not right stiffness and swelling is not right. All these things are telling you your disease is active this is when damage will occur. Treatment to be effective can take time and until they find something that works for you your joints are in danger of damage. Good luck hope things improve.

[Summerrain14 in reply to Hidden]

I think I have a long way to go before I learn to be proactive. I am going to take your advice though and be proactive and contact rheumatologist. Many thanks x

[FRreedman]

If you don't report it, they won't know about, they won't treat it, you will suffer longer and harder. Simples!

[Summerrain14 in reply to FRreedman]

Very true and simples as you say. 😊

[Luna20]

Have you tried it and got relief? Can we get it in the UK?

[helixhelix]

Fair enough to write a post about LDN as a few people have found it effective so it’s useful to provide information. However, it’s wrong to make it a reply to someone who is in pain, as they are in a vulnerable position. You can do a separate post.

I am presuming, perhaps unfairly, that the link you give is your own company so this is a sales pitch to buy your product. If so, you should also make that clear as otherwise you are being underhand and behaving no better than a snake oil salesman.

If this is not the case, then I apologise.

For people in the UK who want to know more about LDN I suggest you look at this site instead

ldnresearchtrust.org

And since there is no evidence on this person’s site that their product has been approved for sale for human consumption in the UK Then maybe especially their page on fake medecines

ldnresearchtrust.org/warnin...

[sparklyshazza in reply to helixhelix]

Have therw been any clinical trials to support this..if so i am.pretty aure we would.all be prescribing and using a less aggressive drug. Thisnis not helpful information for anyone lookong for the magic wand. I agree with the lady who says the same. Very concerned there is no help line fornher to contact as all rheum depts should have them. If in doubt she can always contact NRAS patient line. Fab advice to all rheum patients

[Luna20 in reply to helixhelix]

I have started another post asking about people’s experiences of this 🙂

[helixhelix in reply to Luna20]

Use the search box too, as several previous posts. Agoodlife uses LDN, but not sure about other members at the moment

[nomoreheels in reply to helixhelix]

Simba doesn't doesn't presently use LDN anymore h. It affected her stomach.

[AgedCrone in reply to Luna20]

Of course it’s up to you whether you try LDN...but please check with your doctors first.

You are presumably on some sort of RA medication which could possibly react badly & cause you even more problems.

[Summerrain14 in reply to AgedCrone]

I have contacted my rheumatology team and am seeing them on Friday. I am on meds for my RD and would only take their medical advice. Was a bit taken aback to see the response to my post about whether to contact my rheumatologist.

[AgedCrone in reply to Summerrain14]

I think a lot of the responses were about the LDN post which has been deleted.......

[nomoreheels in reply to helixhelix]

I nearly reported this reply late last night, too late so I hadn't time to check him out with a clear mind but your instincts echo mine.

[helixhelix in reply to nomoreheels]

I reported him, and he seems to have been deleted or deleted himself. I’m fine about LDN as that’s a choice and an option. But not selling unrecognised pills on this site.

[nomoreheels in reply to helixhelix]

I've just replied to the op & noticed it had been deleted. I wasn’t happy with him saying it is a better approach. He knows nothing of the op's history of meds or whether they'd interact. This type of person prays on the vulnerable, someone who's in pain, which really bothers me, more so as she wasn't seeking alternative treatment to the one her Rheumy currently prescribes for her.

[Luna20 in reply to nomoreheels]

Totally agree. I have checked out the LDN Research Trust website. Just doing a bit of research. There are ongoing studies but no clinical evidence for its use in RA or other inflammatory / autoimmune diseases. I think I’ll ask my rheumatologist about it.

[nomoreheels in reply to Luna20]

I've researched LDN in the past but only specified RD. There have been quite a few studies of varying results, certainly nothing to support it's use of over cDMARDs or bDMARDs so remains unlicensed for RD & all other conditions. Something LDN suppliers promote is that it's well tolerated... not true. Side effects include pain in the upper right part of the stomach, jaundice, excessive fatigue, unusual bleeding or bruising, loss of appetite, dark urine, light coloured bowel movements. Would you by medication online? I certainly wouldn’t. This really concerns me as the dosing is entirely left to the person who's bought LDN off license from who know's where without the support of their Rheumy. I'd be really concerned, certainly ticked off, if I were a Rheumy & my patient had asked advice re LDN & still gone against advice.

Let us know what your Rheumy's take on it is?

[Luna20 in reply to nomoreheels]

I am actually considering it for my daughter who has endometriosis (having read the LDN Research Trust website). Nothing, not even the strongest prescription pain killers that make her really drowsy, helps with the pain. I would be happy to Oder it online from a pharmacy recommended by the LDN Research Trust. I have had to resort to ordering medicine online from Europe (for another condition) when there was no equivalent available in the U.K. Costly, though.

[nomoreheels in reply to Luna20]

Oh oh oh, I know that pain, I feel for your daughter. I had two laparoscopies in my 30's, NSAIDs, opioids, hormone treatment, nothing helped. Twice a flippin month. I do hope there's something for her, whatever it may be, to ease that pain. It's so debilitating & tiring. The times I had to take to my bed in the hope sleep would allow me some relief. Thankfully now I only feel it with my bowel & my left ovary infrequently, the pain is less but it makes me shiver to think of those awful times when It wasn’t. I hope something helps for her.

[Luna20 in reply to nomoreheels]

Thank you. It is frustrating that I am not in good health either. I want to focus on helping her.

[nomoreheels in reply to Luna20]

I know, it must be a concern. Has she had any children or is she not at that stage?

[Luna20 in reply to nomoreheels]

She is 16

[nomoreheels in reply to Luna20]

Just before I reply can apologise to Summerrain for piggybacking your post.

Oh, so young then Luna, what a shame. Is she under a Gynaecologist at all? If not I’d really consider asking her GP to refer her as with each month it's likely she'll develop further adhesions giving her more painful/bloating/cramping/constipation symptoms on top of the endo ones she's already having to cope with. If she is under a Gynae maybe discuss you're considering LDN, from the point of view it is still medication which may work but it may also potentially cause problems. Only concerned with her being so young she may need investigations (imaging, examinations etc) & if self-medicating it may skew results/pain whereas if they're aware of prescribed meds they can be taken into account. I really feel for her, being so young too, it must interfere with life each month/fortnight when she should be living it.

It might be worth joint the HU Endometriosis UK site too? I'm sure they'll have lots of uselful info plus help & support for you both. healthunlocked.com/endometr...

[Luna20 in reply to nomoreheels]

My apologies to Summerrain also. Yes she is seeing a gynaecologist. They put her on progesterone only pill to stop the bleeding and, according to them, break down the adhesions after a few months. X-ray, ultrasound and MRI came back normal. They won’t do a lap - say she’s too young.

[nomoreheels in reply to Luna20]

Well, yes, the POP can help control things & it's often chosen as first line treatment. I thought how it may help is to suppress endometrial growth though, by stopping the bleeding, I didn't know it could break down adhesions. Do you both think it odd that imaging came back normal? I understand why she's considered too young for a laparoscopy, though it is the only way of confirming she has endo 100%. Maybe for the future.

[Luna20 in reply to Luna20]

Well, I found one study that suggest that “persistent LDN use leads to reduced dispensing of several medicines used in rheumatoid and seropositive arthritis, possibly due to therapeutic effects.” However, more research is needed.

[Summerrain14 in reply to helixhelix]

I contacted my rheumatology team this morning and have an appointment on a Friday morning to see them for advice.

[Oshgosh]

If you haven’t got access to a helpline or a nurse you need to contact the consultant.good. Luck

[allanah]

Any luck getting hold of them x ?

[Summerrain14 in reply to allanah]

Hi, yes spoke with rheumatology nurse after medical secretary and have an appointment to see her on Friday morning at 9am. My rheumatologist also in clinic too and on hand. Have direct contact number for rheumatologist nurse too which is fab! 😊. Thanks so much for your support!

[allanah in reply to Summerrain14]

Success. Hope they are helpful. Take a list , if you are like me the brain fog kicks in and you forget what you wanted to say!!

[Summerrain14 in reply to allanah]

Good advice. I’m struggling remembering much at the moment so will take that list with me. x

[allanah in reply to Summerrain14]

Argh yes brain fog ...so annoying !!

[nomoreheels]

Hiya Summerrain14. I would take your GP's advice & contact your team. You're fortunate in having open access so use it. Please don't put on a brave face, you've felt poorly for too long. The pain is being persistent, you need to report it & it to be investigated. Bloods aren’t the be all & end all, mine rarely go outside normal values but I can tell when something's wrong, & I take some strong pain relief too, they form an important part of my treatment. You need to talk to someone about how you feel & please don't ever feel you're wasting anyone's time. They'd rather you contact them than struggle on.

Thankfully the reply about LDN has been deleted. It was inappropriate & I felt it was praying on someone requesting help because of pain not seeking alternative treatment.

Turn it round, what would you advise if one of us was asking the same question?

[Summerrain14 in reply to nomoreheels]

Thanks so much for replying to my post. I appreciate just how lucky I am to have open access to my rheumatologist. I am so appreciative of getting an appointment so quickly. The team responded to me within around half an hour too. Such excellent care. My rheumy nurse said exactly what you have about the blood tests and that there are patients like us who’s bloods don’t tell the full picture. Thanks for your lovely message. x

[nomoreheels in reply to Summerrain14]

You're welcome, though no need. Very pleased they responded promptly, & that you have an appointment on Friday. It seems your Rheumy Dept works as all should! 😉

[Summerrain14]

Thanks to everyone for their help and support. Have an appointment on Friday morning with rheumatology nurse and direct contact number too! 😊